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stroke-linecap="round" style="fill:#FFF" d="m320,350a153,153 0 1,0-2,2l170,170m-91-117 110,110-26,26-110-110"></path></svg></a><a id="jr-fip-done" class="wsprkl btn" title="Dismiss find">✘</a></nav><nav id="jr-fip-info-p"><a id="jr-fip-prev" class="wsprkl btn" title="Jump to previuos match">◀</a><button id="jr-fip-matches">no matches yet</button><a id="jr-fip-next" class="wsprkl btn" title="Jump to next match">▶</a></nav></nav></div><div id="jr-epub-interstitial" class="hidden"></div><div id="jr-content"><article data-type="main"><div class="main-content lit-style"><div class="fm-sec bkr_bottom_sep"><div class="bkr_thumb"><a href="https://www.nice.org.uk" title="National Institute for Health and Care Excellence (NICE)" class="img_link icnblk_img" ref="pagearea=logo&targetsite=external&targetcat=link&targettype=publisher"><img class="source-thumb" src="/corehtml/pmc/pmcgifs/bookshelf/thumbs/th-niceng213er11-lrg.png" alt="Cover of Evidence review of barriers and facilitators of joined-up care" /></a></div><div class="bkr_bib"><h1 id="_NBK579709_"><span itemprop="name">Evidence review of barriers and facilitators of joined-up care</span></h1><div class="subtitle">Disabled children and young people up to 25 with severe complex needs: integrated service delivery and organisation across education, health and social care</div><p><b>Evidence review K</b></p><p><i>NICE Guideline, No. 213</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">2022 Mar</span>.<div class="small">ISBN-13: <span itemprop="isbn">978-1-4731-4460-6</span></div></div><div><a href="/books/about/copyright/">Copyright</a> © NICE 2022.</div></div><div class="bkr_clear"></div></div><div id="niceng213er11.s1"><h2 id="_niceng213er11_s1_">Barriers and facilitators of joined-up care</h2><p>
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<b>Recommendations supported by this evidence review</b>
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</p><p>This evidence review supports recommendations 1.1.12 - 1.1.14, 1.1.21 - 1.1.23, 1.1.25, 1.1.39, 1.1.41, 1.1.42, 1.1.45, 1.1.55, 1.1.56, 1.2.6, 1.3.1, 1.3.2, 1.3.5, 1.3.9 – 1.3.11, 1.3.13, 1.3.14, 1.4.1, 1.4.3, 1.4.4, 1.4.9 – 1.4.11, 1.4.12, 1.4.19 - 1.4.22, 1.5.1 – 1.5.3, 1.6.3, 1.7.6, 1.8.6, 1.8.12, 1.14.1, 1.15.1, 1.15.6 - 1.15.8, 1.15.9 - 1.15.11, 1.15.14 - 1.15.16, 1.15.19, 1.15.20, 1.15.24, 1.15.25, 1.15.27 – 1.15.29, 1.16.2, 1.17.1, 1.17.3, 1.17.5, 1.17.8 - 1.17.12, 1.17.14, 1.17.15. Other evidence supporting these recommendations can be found in the evidence reviews on Views and experiences of service users (evidence report A), Supporting participation in education and social activities (evidence report F), Views and experiences of service providers (evidence report M), Commissioning, practice and service delivery models (evidence report N).</p><div id="niceng213er11.s1.1"><h3>Review question</h3><p>What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</p><div id="niceng213er11.s1.1.1"><h4>Introduction</h4><p>The views and experiences of service users, providers and practitioners are integral to improving the quality and performance of joined-up care between health, social care and education services. The aim of this review is to identify the barriers and facilitators to joined-up care between health, social care and education services for disabled children and young people with severe complex needs as perceived or experienced by the service users themselves, service providers and practitioners.</p><p>The qualitative evidence from this review will be combined with quantitative evidence from other systematic reviews on effective joint commissioning, integration and joint working between practitioners across health, social care and education services to identify the optimal delivery of joined-up care.</p><p>At the time of scoping and developing the review protocols, documents referred to health, social care and education in accordance with NICE style. When discussing the evidence and making recommendations, these services will be referred to in the order of education, health and social care for consistency with education, health and care plans.</p></div><div id="niceng213er11.s1.1.2"><h4>Summary of the protocol</h4><p>See <a class="figpopup" href="/books/NBK579709/table/niceng213er11.tab1/?report=objectonly" target="object" rid-figpopup="figniceng213er11tab1" rid-ob="figobniceng213er11tab1">Table 1</a> for a summary of the population, phenomenon of interest and context characteristics of this review.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng213er11tab1"><a href="/books/NBK579709/table/niceng213er11.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er11tab1" rid-ob="figobniceng213er11tab1"><img class="small-thumb" src="/books/NBK579709/table/niceng213er11.tab1/?report=thumb" src-large="/books/NBK579709/table/niceng213er11.tab1/?report=previmg" alt="Table 1. Summary of the protocol." /></a><div class="icnblk_cntnt"><h4 id="niceng213er11.tab1"><a href="/books/NBK579709/table/niceng213er11.tab1/?report=objectonly" target="object" rid-ob="figobniceng213er11tab1">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="#niceng213er11.appa">appendix A</a>.</p></div><div id="niceng213er11.s1.1.3"><h4>Methods and process</h4><p>This evidence review was developed using the methods and process described in <a href="https://www.nice.org.uk/process/pmg20/chapter/introduction-and-overview" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">Developing NICE guidelines: the manual</a>. Methods specific to this review question are described in the review protocol in <a href="#niceng213er11.appa">appendix A</a> and the <a href="/books/NBK579709/bin/niceng213er11_bm1.pdf">methods</a> document (Supplement A).</p><p>Declarations of interest were recorded according to <a href="https://www.nice.org.uk/about/who-we-are/policies-and-procedures" ref="pagearea=body&targetsite=external&targetcat=link&targettype=uri">NICE’s conflicts of interest policy</a>.</p></div><div id="niceng213er11.s1.1.4"><h4>Qualitative evidence</h4><div id="niceng213er11.s1.1.4.1"><h5>1.1.1.1. Included studies</h5><p>A systematic review of the literature was conducted using a combined search. Thirty-three qualitative studies were included in this review (<a class="bibr" href="#niceng213er11.s1.ref1" rid="niceng213er11.s1.ref1">Adams 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref2" rid="niceng213er11.s1.ref2">Adams 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref3" rid="niceng213er11.s1.ref3">Boesley 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref4" rid="niceng213er11.s1.ref4">Boyce 2015</a>; <a class="bibr" href="#niceng213er11.s1.ref5" rid="niceng213er11.s1.ref5">Brooks 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref6" rid="niceng213er11.s1.ref6">Children’s Commissioner for Wales 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref7" rid="niceng213er11.s1.ref7">Cohen 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref8" rid="niceng213er11.s1.ref8">Council for Disabled Children 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref9" rid="niceng213er11.s1.ref9">Dillenburger 2016</a>; <a class="bibr" href="#niceng213er11.s1.ref10" rid="niceng213er11.s1.ref10">Fox 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref11" rid="niceng213er11.s1.ref11">Griffith 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref12" rid="niceng213er11.s1.ref12">Hurt 2019</a>; <a class="bibr" href="#niceng213er11.s1.ref13" rid="niceng213er11.s1.ref13">Hutton 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref14" rid="niceng213er11.s1.ref14">Kaehne 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref15" rid="niceng213er11.s1.ref15">Karim 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref16" rid="niceng213er11.s1.ref16">Kiernan 2019</a>; <a class="bibr" href="#niceng213er11.s1.ref17" rid="niceng213er11.s1.ref17">Kirk 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref18" rid="niceng213er11.s1.ref18">McCartney 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref19" rid="niceng213er11.s1.ref19">McConkey 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref20" rid="niceng213er11.s1.ref20">McKean 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref21" rid="niceng213er11.s1.ref21">Molteni 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref22" rid="niceng213er11.s1.ref22">National Autistic Society 2015</a>; <a class="bibr" href="#niceng213er11.s1.ref23" rid="niceng213er11.s1.ref23">Palikara 2019</a>; <a class="bibr" href="#niceng213er11.s1.ref24" rid="niceng213er11.s1.ref24">RIP STARS 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref25" rid="niceng213er11.s1.ref25">Rodriguez 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref26" rid="niceng213er11.s1.ref26">Sales 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref27" rid="niceng213er11.s1.ref27">Skipp 2016</a>; <a class="bibr" href="#niceng213er11.s1.ref28" rid="niceng213er11.s1.ref28">Smith 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref29" rid="niceng213er11.s1.ref29">Spivack 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref30" rid="niceng213er11.s1.ref30">Taylor 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref31" rid="niceng213er11.s1.ref31">Thom 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref32" rid="niceng213er11.s1.ref32">Thom 2015</a>; <a class="bibr" href="#niceng213er11.s1.ref33" rid="niceng213er11.s1.ref33">Young 2018</a>).</p><p>The date of publication ranged from 2013 to 2019. All included studies were conducted in the UK and provided data on the views and experiences of barriers and facilitators to joined-up care between education, health and social care services. Data collection methods included: surveys (<a class="bibr" href="#niceng213er11.s1.ref7" rid="niceng213er11.s1.ref7">Cohen 2017</a>), semi-structured surveys (<a class="bibr" href="#niceng213er11.s1.ref23" rid="niceng213er11.s1.ref23">Palikara 2019</a>), surveys with open ended or free text questions (<a class="bibr" href="#niceng213er11.s1.ref1" rid="niceng213er11.s1.ref1">Adams 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref22" rid="niceng213er11.s1.ref22">National Autistic Society 2015</a>), interviews (<a class="bibr" href="#niceng213er11.s1.ref2" rid="niceng213er11.s1.ref2">Adams 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref14" rid="niceng213er11.s1.ref14">Kaehne 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref17" rid="niceng213er11.s1.ref17">Kirk 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref28" rid="niceng213er11.s1.ref28">Smith 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref30" rid="niceng213er11.s1.ref30">Taylor 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref31" rid="niceng213er11.s1.ref31">Thom 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref32" rid="niceng213er11.s1.ref32">Thom 2015</a>), semi-structured interviews (<a class="bibr" href="#niceng213er11.s1.ref3" rid="niceng213er11.s1.ref3">Boesley 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref4" rid="niceng213er11.s1.ref4">Boyce 2015</a>; <a class="bibr" href="#niceng213er11.s1.ref8" rid="niceng213er11.s1.ref8">Council for Disabled Children 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref10" rid="niceng213er11.s1.ref10">Fox 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref11" rid="niceng213er11.s1.ref11">Griffith 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref15" rid="niceng213er11.s1.ref15">Karim 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref16" rid="niceng213er11.s1.ref16">Kiernan 2019</a>; <a class="bibr" href="#niceng213er11.s1.ref18" rid="niceng213er11.s1.ref18">McCartney 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref19" rid="niceng213er11.s1.ref19">McConkey 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref20" rid="niceng213er11.s1.ref20">McKean 2017</a>; <a class="bibr" href="#niceng213er11.s1.ref26" rid="niceng213er11.s1.ref26">Sales 2018</a>; <a class="bibr" href="#niceng213er11.s1.ref29" rid="niceng213er11.s1.ref29">Spivack 2014</a>), focus groups (<a class="bibr" href="#niceng213er11.s1.ref12" rid="niceng213er11.s1.ref12">Hurt 2019</a>), interviews and group discussions (<a class="bibr" href="#niceng213er11.s1.ref24" rid="niceng213er11.s1.ref24">RIP STARS 2018</a>), semi-structured interviews and focus groups (<a class="bibr" href="#niceng213er11.s1.ref5" rid="niceng213er11.s1.ref5">Brooks 2013</a>; <a class="bibr" href="#niceng213er11.s1.ref25" rid="niceng213er11.s1.ref25">Rodriguez 2014</a>; <a class="bibr" href="#niceng213er11.s1.ref27" rid="niceng213er11.s1.ref27">Skipp 2016</a>; <a class="bibr" href="#niceng213er11.s1.ref33" rid="niceng213er11.s1.ref33">Young 2018</a>), focus groups and interviews (<a class="bibr" href="#niceng213er11.s1.ref13" rid="niceng213er11.s1.ref13">Hutton 2018</a>), focus groups and online questionnaires (<a class="bibr" href="#niceng213er11.s1.ref6" rid="niceng213er11.s1.ref6">Children’s Commissioner for Wales 2018</a>), semi-structured interviews, questionnaire with free text questions and focus groups (<a class="bibr" href="#niceng213er11.s1.ref9" rid="niceng213er11.s1.ref9">Dillenburger 2016</a>), and focus groups, semi-structured interviews and a questionnaire with an open-ended question (<a class="bibr" href="#niceng213er11.s1.ref21" rid="niceng213er11.s1.ref21">Molteni 2013</a>).</p><p>Study populations included disabled children and young people with severe complex needs, their families and carers, and professionals from education, health and social care services. The included studies are summarised in <a class="figpopup" href="/books/NBK579709/table/niceng213er11.tab2/?report=objectonly" target="object" rid-figpopup="figniceng213er11tab2" rid-ob="figobniceng213er11tab2">Table 2</a>.</p><p>See the literature search strategy in <a href="#niceng213er11.appb">appendix B</a> and study selection flow chart in <a href="#niceng213er11.appc">appendix C</a>.</p></div><div id="niceng213er11.s1.1.4.2"><h5>1.1.1.2. Excluded studies</h5><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er11.appj">appendix J</a>.</p></div></div><div id="niceng213er11.s1.1.5"><h4>Summary of studies included in the qualitative evidence</h4><p>Summaries of the studies that were included in this review are presented in <a class="figpopup" href="/books/NBK579709/table/niceng213er11.tab2/?report=objectonly" target="object" rid-figpopup="figniceng213er11tab2" rid-ob="figobniceng213er11tab2">Table 2</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng213er11tab2"><a href="/books/NBK579709/table/niceng213er11.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er11tab2" rid-ob="figobniceng213er11tab2"><img class="small-thumb" src="/books/NBK579709/table/niceng213er11.tab2/?report=thumb" src-large="/books/NBK579709/table/niceng213er11.tab2/?report=previmg" alt="Table 2. Summary of included studies." /></a><div class="icnblk_cntnt"><h4 id="niceng213er11.tab2"><a href="/books/NBK579709/table/niceng213er11.tab2/?report=objectonly" target="object" rid-ob="figobniceng213er11tab2">Table 2</a></h4><p class="float-caption no_bottom_margin">Summary of included studies. </p></div></div><p>See the full evidence tables in <a href="#niceng213er11.appd">appendix D</a>. No meta-analysis was conducted (and so there are no forest plots in <a href="#niceng213er11.appe">appendix E</a>).</p><p>The following themes were identified through analysis of the included studies:
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<ul><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Working across multiple services</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>Importance of key worker or lead professional</div></li><li class="half_rhythm"><div>Transition</div></li></ul></p><p>The data from the included studies were synthesised and explored in a number of central themes and sub-themes (central themes shown in <b>Error! Reference source not found.</b>; see <a href="#niceng213er11.appl">appendix L</a> for sub-theme maps).</p><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng213er11fig1" co-legend-rid="figlgndniceng213er11fig1"><a href="/books/NBK579709/figure/niceng213er11.fig1/?report=objectonly" target="object" title="Figure 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er11fig1" rid-ob="figobniceng213er11fig1"><img class="small-thumb" src="/books/NBK579709/bin/niceng213er11f1.gif" src-large="/books/NBK579709/bin/niceng213er11f1.jpg" alt="Figure 1. Theme map." /></a><div class="icnblk_cntnt" id="figlgndniceng213er11fig1"><h4 id="niceng213er11.fig1"><a href="/books/NBK579709/figure/niceng213er11.fig1/?report=objectonly" target="object" rid-ob="figobniceng213er11fig1">Figure 1</a></h4><p class="float-caption no_bottom_margin">Theme map. </p></div></div></div><div id="niceng213er11.s1.1.6"><h4>Summary of the qualitative evidence</h4><p>The evidence generated 17 main themes. Twenty studies provided evidence relating to relationships between service providers. Fourteen studies provided evidence relating to communication and support. Ten studies provided evidence relating to the involvement of disabled children and young people and their families and carers, and their relationships with service providers. Nine studies provided evidence relating to attitudes and social stigma about service provisions. Fourteen studies provided evidence relating to funding and resources. Eighteen studies provided evidence relating to organisation of services. Twelve studies provided evidence relating to information sharing. Twelve studies provided evidence relating to long waiting times for support. Nine studies provided evidence relating to difficulty in obtaining an education, health and care (EHC) plan (or replacing a statement of special educational need with an EHC plan). Ten studies provided evidence relating to an imbalanced distribution in the amount of support provided to children and young people. Eleven studies provided evidence relating to professional and staff knowledge and training. Fifteen studies provided evidence relating to joined-up care requiring a substantial amount of time, organisation and commitment. Three studies provided evidence relating to working across multiple services. Nine studies provided evidence relating to diagnosis and identification of needs first. Seven studies provided evidence relating to the introduction of EHC plans. Nine studies provided evidence relating to the importance of a key worker or lead professional. Three studies provided evidence relating to transition. The quality of the evidence ranged from very low to high.</p><p>See <a href="#niceng213er11.appf">appendix F</a> for full GRADE-CERQual tables.</p></div><div id="niceng213er11.s1.1.7"><h4>Economic evidence</h4><div id="niceng213er11.s1.1.7.1"><h5>1.1.1.3. Included studies</h5><p>A systematic review of the economic literature was conducted but no economic 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/NBK579709/bin/niceng213er11_bm2.pdf">Supplement B</a> for details.</p></div><div id="niceng213er11.s1.1.7.2"><h5>1.1.1.4. Excluded studies</h5><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er11.appj">appendix J</a>.</p></div></div><div id="niceng213er11.s1.1.8"><h4>Summary of included economic evidence</h4><p>No economic studies were identified which were applicable to this review question.</p></div><div id="niceng213er11.s1.1.9"><h4>Economic model</h4><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="niceng213er11.s1.1.10"><h4>Evidence statements</h4><div id="niceng213er11.s1.1.10.1"><h5>1.1.1.5. Economic</h5><p>No economic studies were identified which were applicable to this review question.</p></div></div><div id="niceng213er11.s1.1.11"><h4>The committee’s discussion and interpretation of the evidence</h4><div id="niceng213er11.s1.1.11.1"><h5>1.1.1.6. The outcomes that matter most</h5><p>The committee agreed that the views of children and young people, their families and carers and commissioners, providers and practitioners should be considered to capture a broad range of perspectives. Both general views and perceived barriers and facilitators of joined-up care across education, health, social care, and other services for disabled children and young people with severe complex needs were considered. The committee did not pre-specify themes as they did not want to constrain the evidence, however they identified a number of potential themes as illustrative of the main themes to guide the review. The potential themes were not exhaustive and an emergent approach was taken to the thematic analysis. The committee focused their discussion only on themes that emerged from the evidence; the potential themes were not discussed by the committee when developing recommendations. This question presents the barriers and facilitators of joined-up care. The general experiences of children and young people, their families and carers, commissioners, providers and practitioners are considered in other review questions (see evidence reports A and M).</p></div><div id="niceng213er11.s1.1.11.2"><h5>1.1.1.7. The quality of the evidence</h5><p>The evidence was assessed using GRADE-CERQual methodology and the overall quality ranged from very low to high. Concerns about the methodological limitations of the primary studies were assessed with the CASP checklist and ranged from “major” to “none or very minor”. The most common issues were lack of consideration of the relationship between researcher and participants, somewhat limited detail provided on data analysis, no justification for the data collection methods and setting, an absence of a clear statement of findings, lack of information about recruitment and potential for recruitment bias and a lack of information about, or justification for, study design. Concerns about coherence ranged from “minor” to “none or very minor”. For the majority of the review findings, concerns were “none or very minor”, as there was no ambiguous data nor data that contradicted the findings. For the remaining findings, some of the evidence was contradictory. Concerns about relevance were “none or very minor” for all of the review findings. This is because no evidence from a substantially different context as the review question was included in the review. Concerns about adequacy ranged from “major” to “none or very minor”. There were major concerns where the evidence did not offer rich data moderate concerns where the evidence offered some rich data; and minor concerns where the evidence offered moderately rich data.</p><p>The quality of the review findings is summarised here according to the over-arching themes and sub-themes:</p></div></div><div id="niceng213er11.s1.1.12"><h4>Main theme 1: Relationships between service providers</h4><ul><li class="half_rhythm"><div>Sub-theme 1.1: Negative professional relationships and disagreements inhibit joint working. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.2: Service providers failing to take responsibility and be effectively involved in collaborative working. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.3: Importance of understanding the roles, responsibilities and expectations of other professionals/staff. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.4: Putting aside professional differences for the good of the child or young person. The overall quality of this sub-theme was judged to be very moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.5: Recurrent liaisons/conversations among professionals were valued to improve relationships and effective team working. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.6: Mutual respect between professionals which allows equal opportunity to have opinions voiced and challenged. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.7: Shared values and priorities promote joint working. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.8: Clear targets improved accountability and the distribution of responsibility across services. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.13"><h4>Main theme 2: Communication and support</h4><ul><li class="half_rhythm"><div>Sub-theme 2.1: Lack of communication (verbal and written) between services. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 2.2: Lack of communication and support that address language and cultural barriers. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 2.3: More information and support for service users to understand and access the available services. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.14"><h4>Main theme 3: Service users’ involvement and relationships with service providers</h4><ul><li class="half_rhythm"><div>Sub-theme 3.1: Co-working improved when professionals worked closely with parents and kept them informed. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 3.2: Families vary in their ability and willingness to make decisions and be involved in care planning. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.15"><h4>Main theme 4: Attitudes and social stigmas about service provisions</h4><ul><li class="half_rhythm"><div>Sub-theme 4.1: Fear of, and stigma associated with, social services. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 4.2: Need to work at shifting attitudes to look holistically at meeting the needs of children/young people. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 4.3: Service providers not ‘buying in’ to approach. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 4.4: Low expectations of the ambitions and capability of children and young people. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.16"><h4>Main theme 5: Funding and resources</h4><ul><li class="half_rhythm"><div>Sub-theme 5.1: Joint funding and strategic planning as a method of supporting collaborative working. The overall quality of this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-theme 5.2: Lack of funding and resources is a barrier to providing services and person-centred, joined-up care The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.3: Not enough funding or resources to support change from statements to EHC plans. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.4: Funding is driven by special educational needs. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.5: Fighting against financial pressures. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 5.6: Competing priorities can impact the allocation of limited resources. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.7: Staffing of services impacts the quality of the service. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.8: Personalised budgets and direct payments increase flexibility but also burden on the family to make decisions and arrange care. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.9: Service providers have a lack of control over allocation of resources and there is a lack of transparency about decision making. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.17"><h4>Main theme 6: Organisation of services</h4><ul><li class="half_rhythm"><div>Sub-theme 6.1: Rigid definition of, and criteria for, services leads to gaps in service provision. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 6.2: Specialist services provide benefit but there is a lack of provisions to make these services available. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 6.3: Mainstream services provide benefit but more effort and support is needed to integrate children and young people. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 6.4: Lack of appropriate services. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 6.5: Inconsistency across paperwork and procedures used in different services, regions and local authorities. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 6.6: Importance of clear pathways for referrals between services. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 6.7: Having the right people involved and collaborating can overcome gaps in service provision. The overall quality of this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-theme 6.8: Using a more flexible approach where services are able to meet the individual needs of the child/young person, rather than fitting the child/young person within existing rigid service models would be beneficial. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.18"><h4>Main theme 7: Information sharing</h4><ul><li class="half_rhythm"><div>Sub-theme 7.1: Information is not always shared nor sufficient to meet the needs of other services. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 7.2: Sharing information to streamline processes and transition. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 7.3: Sharing information increases understanding of the child or young person and their needs. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 7.4: Inconsistent information provided to parents. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 7.5: Accessing electronic patient records through an online portal to improve working. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 7.6: Development and sharing of a behaviour management plan provided benefit. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.19"><h4>Main theme 8: Long waiting times for support</h4><ul><li class="half_rhythm"><div>Sub-theme 8.1: Lack of urgency to provide support until the child/young person reaches crisis point. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 8.2: Replacements of statements with EHC plans resulted in delays to support provisions. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 8.3: Unavailability of staff able to complete the necessary paperwork/assessments. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 8.4: Additional assessments cause delays in implementing EHC plans. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 8.5: Delays from one service can impact access to other services. The overall quality of this sub-theme was judged to be low.</div></li></ul></div><div id="niceng213er11.s1.1.20"><h4>Main theme 9: Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</h4><ul><li class="half_rhythm"><div>Sub-theme 9.1: An over emphasis on academic progress overshadowed other areas of need and impacted on the child/young person’s ability to access an EHC plan. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 9.2: Lack of understanding of, and difficulty providing evidence for, SEMH needs is a barrier to accessing EHC plans. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 9.3: Not all children/young people who need support meet the criteria for an EHC plan. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.4: The process of getting an EHC plan takes too long and requires a lot of work. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 9.5: Children/young people need to reach a crisis point to access EHC plans. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 9.6: Professionals, staff and families lack understanding of the EHC plan process. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.7: Professionals and staff lack the expertise and knowledge needed to complete the EHC plan. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.8: There is a lack of transparency about decision making for EHC plans, timescales for review and processes for appeal or complaints. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.9: A lack of available services is increasing demands for EHC plans. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 9.10: Time taken for EHC plans to be refined and embedded in practice. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.11: Revisions to EHC plan paperwork and processes made without consultation or notice. The overall quality of this sub-theme was judged to be high.</div></li></ul></div><div id="niceng213er11.s1.1.21"><h4>Main theme 10: An imbalanced distribution in the amount of support provided to children/young people</h4><ul><li class="half_rhythm"><div>Sub-theme 10.1: Individuals who shout the loudest are more likely to receive the desired support. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 10.2: Looked after children are more likely to receive an EHC plan. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 10.3: Families vary in their ability and willingness to fight for services. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 10.4: Regional disparity in the availability of services. The overall quality of this sub-theme was judged to be low.</div></li></ul></div><div id="niceng213er11.s1.1.22"><h4>Main theme 11: Professional and staff knowledge and training</h4><ul><li class="half_rhythm"><div>Sub-theme 11.1: Professionals and staff lack the necessary skills and knowledge to work effectively to meet the needs of children and young people. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 11.2: Misconceptions and lack of understanding from professionals lead to incorrect, or a lack of, advice and referrals. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 11.3: Multi-agency training is important to bridge the gaps between professionals and get everyone on the same page. The overall quality of this sub-theme was judged to be very low.</div></li><li class="half_rhythm"><div>Sub-theme 11.4: Opportunities to learn from, observe and model other services. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 11.5: Service providers having knowledge of the EHC plan process. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.23"><h4>Main theme 12: Joined-up care requires a substantial amount of time, organisation and commitment</h4><ul><li class="half_rhythm"><div>Sub-theme 12.1: Large time investment is needed by parents to coordinate services and manage appointments. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 12.2: Challenge to arrange meetings/discussions that are attended by all necessary staff/professionals. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 12.3: Lack of ongoing involvement from external agencies. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 12.4: Responsibility and resources are required to ensure plans are implemented and reviewed to accurately reflect changing needs. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 12.5: Workloads are negatively impacted by the cumbersome and onerous nature of paperwork and interprofessional working. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.24"><h4>Main theme 13: Working across multiple services</h4><ul><li class="half_rhythm"><div>Sub-theme 13.1: Sharing staff across multiple settings improved knowledge of the child. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 13.2: Assigned consistent one point of contact or agency would be beneficial to joint working. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.25"><h4>Main theme 14: Diagnosis and identification of needs first</h4><ul><li class="half_rhythm"><div>Sub-theme 14.1: Diagnosis as the initial mediation resulted in delays in referrals, access to services, and receiving information and support. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 14.2: Professionals were more committed to achieving multi-disciplinary working for complex diagnoses and had to rationalise making an independent diagnosis. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 14.3: Early identification of needs and making referrals before a diagnosis has been reached promotes early access to support. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 14.4: Service providers having knowledge of the child or young person’s needs at the start of the process. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 14.5: Parents identifying concerns and proactively seeking help. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.26"><h4>Main theme 15: Introduction of EHC plans</h4><ul><li class="half_rhythm"><div>Sub-theme 15.1: Lack of SMART outcomes in EHC plans makes it unclear what support will be needed and who is responsible for providing it. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 15.2: Recognising the child or young persons’ strengths can lead to loss of service provision. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 15.3: EHC plans are primarily concentrated around education and place less emphasis on health and social care. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 15.4: EHC plans have increased joint working and integration. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.27"><h4>Main theme 16: Importance of key worker or lead professional</h4><ul><li class="half_rhythm"><div>Sub-theme 16.1: Continuity of key worker/lead professional is important for consistency and relationships. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub0theme 16.2: Key worker/lead professional is important for having a holistic view and coordinating services. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div><div id="niceng213er11.s1.1.28"><h4>Main theme 17: Transition</h4><ul><li class="half_rhythm"><div>Sub-theme 17.1: Preparation for adulthood and decision making for transition is insufficient, inconsistent and left too late. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 17.2: Differences in thresholds for accessing adult services compared with child services. The overall quality of this sub-theme was judged to be low.</div></li></ul><div id="niceng213er11.s1.1.28.1"><h5>1.1.1.8. Benefits and harms</h5><p>Where the qualitative evidence integrates with quantitative evidence, links are discussed in the associated quantitative reviews. This discussion covers qualitative evidence only. There was moderate quality evidence from sub-theme 2.3 that families are not given enough information about available services and their roles, and that more support is needed to help families understand their options to empower them to make decisions and help them to access services. The committee were aware that the SEND Regulations 2014 requires local authorities to provide information and advice on the range of services available and that the SEND Local Offer should include information about all available services. Therefore, they recommended that the local authority should include this information, as well as explaining the roles of different services, in their SEND Local Offer [1.17.14]. The committee also agreed the importance of highlighting that SEND Information, Advice and Support services should help children, young people and their families and carers to understand the relevance of this information to their specific needs [1.1.25]. There was also moderate quality evidence from sub-theme 2.2 that language barriers made it difficult for parents to find out about available services and that more support was needed to help them understand and access what was available. The committee were aware, based on their experience, that parents and carers may also have disabilities or communication difficulties that can create a barrier to communication and understanding available information, in addition to any language barriers [1.1.22]. Therefore, they recommended that the most effective way of communication with parents and carers is established, which may include, but is not limited to, providing information in different languages or using an interpreter [1.1.21]. The committee acknowledged that there are variations in the use of interpreters across services, with health services using independent translation services compared with extended family and friends often being used as translators in education services. However, the committee did not make a recommendation about this as it should be covered by local policies and service level agreements.</p><p>Moderate quality evidence from sub-theme 5.2 showed that some practitioners reported that there has been a decrease in funding and that this has impacted the availability of services and acts as a barrier to providing person-centred, joined-up care. The committee highlighted that under section 42 of the Children and Families Act 2014 local authorities and health commissioners have a duty to secure or arrange (respectively) the provision specified in EHC plans. They therefore recommending that sufficient funding should be provided to enable the support in EHC plans to be provided [1.4.21]. There was moderate quality evidence from sub-theme 5.9 that practitioners’ requests for additional funding to support a child or young person can be refused without a reason being provided. This causes frustration, creates an obstacle to providing transparent information to children, young people and their families, and can make it difficult to construct an appeal. Therefore, the committee made a strong recommendation that those making the decisions explain the reasons for any refusals to provide additional resources to practitioners so that they can explain this to the child or young person and their family and explain potential courses of action [1.4.22]. Further, low quality evidence from sub-theme 5.5 highlighted that some practitioners felt financial pressure to not apply for EHC plans. This was somewhat consistent with views from parents that there is pressure to accept services that are less costly than others. The committee noted that the Children and Families Act 2014 requires EHC needs assessment to be based on the presence of special educational needs that may require special educational provision and, therefore, recommended that local authorities explain that EHC needs assessment should be requested based solely on a child or young person’s needs [1.3.2]. The committee also agreed to highlight the importance of including this information in the SEND Local Offer [1.17.14]. There was moderate quality evidence in sub-theme 6.1 from both families and practitioners that narrow entry criteria for services, such as requiring a specific diagnosis or having different age thresholds based on diagnosis, created gaps in service provision. Further, parents reported that some services had entry criteria that depended on previous use of services, such as being ineligible for adult mental health services if their child had attended mainstream school. The committee discussed that it may be appropriate to limit some specialised services to a specific diagnosis but that it is important to consider whether a child’s or young person’s needs are consistent with those services’ aims and if, therefore, they are likely to derive benefit from the service. Therefore, the committee agreed that access should not be based on diagnosis (unless there is a medical reason for this) and/or previous use of services alone and that needs and potential contraindications should also be considered [1.17.3].</p><p>The committee’s understanding of the SEND Code of Practice (2015) is that service provision should be commissioned to meet the needs of the population in that local authority (following a joint strategic needs assessment). However, there was moderate quality evidence from sub-theme 6.8 that parents, carers and practitioners thought that services were inflexible and that children were required to fit within existing services rather than asking families what they need from services. This aligned with the committee’s experience so they agreed it was it important to re-emphasise in their recommendations that services should be commissioned based on the child or young person’s needs [1.17.8]. The committee were aware that the Children and Families Act 2014 and the SEND Regulations 2014 require local authorities to involve children, young people and their parents in planning and reviewing the SEND Local Offer, which gives families the opportunity to say what services they think are needed and to raise if they are not happy with the available services. However, in the committee’s experience, feedback is rarely given, which could indicate that people do not know how to do this, and some parents reported that they do not know what the SEND Local Offer is. Therefore, the committee made a recommendation to support children, young people and their families to provide this feedback [1.17.15].</p><p>Moderate quality evidence from sub-theme 6.3 highlighted that practitioners and parents reported that mainstream services, including education, provided a benefit but more effort, support and training was needed for education providers in order to integrate disabled children and young people into mainstream education. There was also evidence that specialist services provide a benefit, but this was very low quality evidence and not specific to education. Therefore, the committee agreed they could not make a recommendation about whether disabled children and young people with severe complex needs should attend mainstream or specialist schools, but made a recommendation in support of training for education practitioners to support integration where appropriate [1.15.15].</p><p>There was some moderate quality evidence from sub-themes 1.1 and 1.4 that there can be negative relationships between professionals and that there can be professional differences and disagreements due to this and competing roles. However, evidence from sub-theme 1.4 reported that practitioners agreed it was important to put aside differences to work together for the good of the child. Conversely, there was moderate quality evidence from sub-theme 1.6 that mutual respect and viewing other practitioners as equal partners increased the opportunity to raise opinions and challenge those of others, which was seen to improve joint working. There was also moderate quality evidence from sub-theme 1.5 that working relationships improved when practitioners worked together frequently or for an extended period of time, and had the opportunity to meet face-to-face. The committee agreed that if practitioners collaborated to develop a positive working culture and take the time to develop positive relationships with each other this would improve joint working [1.14.1]. The committee acknowledged that there needs to be the opportunity to air and resolve disputes to improve working relationships. The committee agreed that most services have procedures in place for how to deal with disagreement within their service, but in their experience there would be a benefit to establishing procedures for resolving interagency disagreements [1.16.2]. Without such policies and procedures in place, disagreements between different services may not be resolved which would be likely to negatively affect the quality of support provided to children and young people. There was evidence that closer joint working improved knowledge and understanding of others roles, responsibilities and expectations, which in turn made it easier to have discussions with colleagues and focus on meeting the needs of the child or young person. Based on their experience, the committee agreed that training practitioners to understand the roles of other people and services involved in the care of children and young people would improve joint working. However as they did not have evidence of the effectiveness of training to do this, they made a weak recommendation [1.15.14]. There was also moderate quality evidence from sub-theme 1.7 that joint working improved when practitioners had shared values, particularly regarding commitment to working collaboratively and using a child or young person-centred approach. The committee agreed that this was important but did not make a specific recommendation in response, as following the recommendations made in this guideline should help to align these values across services and individual practitioners. The committee agreed that service managers should make sure there is dedicated time for team and relationship building to enable the above recommendations as, based on their experience, it would be difficult for practitioners to find the time to develop relationships without dedicated time for this and support from managers [1.15.1]. The committee acknowledged that time and resources are stretched but agreed that dedicated time didn’t necessarily mean additional time and that this is often built into training and away days. There was also moderate quality evidence from sub-theme 1.5 that working relationships improved with co-location of services, but the evidence was not of sufficient quality to recommend this due to the significant impact it would have on the organisation of services.</p><p>There was moderate quality evidence from sub-theme 1.2 that practitioners were failing to take responsibility to be effectively involved in collaborative working, including that they did not attend interagency meetings, or that they failed to prepare for meetings in advance. The committee agreed that it was crucial practitioners make all reasonable efforts to attend meetings to enable effective joint planning to meet the needs of disabled children and young people with severe complex needs but acknowledged that it may not always be possible to attend. In these instances, the committee agreed that the person who arranged the meeting should be informed, that ideally a briefed delegate, or alternatively a written update or report, should be sent in the practitioner’s place and that it is important the practitioner requests details of any actions relevant to them from the meeting where they were absent, that these are followed up and that minutes and action logs from the meeting are reviewed when available [1.1.42]. The committee agreed that taking these steps would help to ensure that meeting time is used effectively and that non-attendance at meetings would not introduce delays in decision-making and provision of support. In the committee’s experience, having someone the child or young person and their family is unfamiliar, or uncomfortable with, at meetings may cause them discomfort or distress and limit the productivity of meetings. Therefore, they acknowledged that sometimes it may be in the best interest to reschedule meetings, if this does not pose a risk to meeting statutory timescales. However, the committee agreed that it was also important to consider the impact of rescheduling on the family as, for example, parents or carers may need to take time off work to attend meetings which could result in a loss of income [1.1.41]. There was moderate quality evidence from sub-theme 1.8 that having actions that were agreed in front of other practitioners and parents improved accountability and made it more likely that practitioners would follow through on agreed actions. The committee discussed whether this should just apply to actions arising from formal interagency meetings but agreed it should apply to all interagency interactions. They acknowledged that it will not always be possible to agree actions in front of practitioners, children and young people and their parent and carers, but agreed that actions that will directly affect the child or young person should be recorded in an action log and shared with everyone. They also agreed that the actions need to be recorded in a format that can be understood, as it would be unlikely that the same benefits of improved follow through would be seen if they are not in a format that can be understood by everyone, as there would be less accountability (particularly if the child or young person has cognitive impairments or communication needs or disorders) [1.1.39]. Finally, the committee agreed that reviewing the action log regularly to ensure the actions are being done would also be likely to increase the likelihood of practitioners following through on actions and reduce delays [1.1.39].</p><p>Moderate quality evidence from theme 16 highlighted that key workers are seen as important for having a holistic view of the child or young person and coordinating services. The committee recommended that a practitioner should be assigned to provide key working support for each child and young person [1.15.7]. Also that children, young people and their families are provided with the contact details for the practitioner providing key working support based on moderate quality evidence from sub-theme 13.2 that a single point of contact would simplify processes and be beneficial to joint working [1.15.6]. This also aligns with the main functions of key working support that are included in the SEND Code of Practice (2015). There was low to moderate quality evidence from sub-themes 12.1 and 12.2 and another qualitative review (evidence report A, sub-theme 4.2) that children, young people and their families spent a considerable amount of time chasing and coordinating services, conducting administrative work and arranging meetings. There was also low to moderate quality evidence from sub-themes 2.1 and 12.1 that there is a lack of communication between services. Therefore, the committee agreed that those undertaking key working support should be responsible for coordinating and communicating with different services so that parents and carers are not expected to carry out all of this work themselves [1.15.8], which aligns with main functions of key working support that are specified in the SEND Code of Practice (2015). There was low quality evidence from sub-theme 12.1 that parents and carers felt a sense of responsibility in driving the necessary care provisions and invested a large amount of time to coordinate services and manage appointments. This reflected the committees’ experience and they agreed that parents and carers should not have to carry out all of this work themselves, as doing so took time and energy away from parenting and/or caring for the child or young person. The committee agreed that the recommendations made about providing key working support should help to address these issues. The committee were also aware that for children and young people who are looked after, EHC plan annual reviews are supposed to be coordinated with social care reviews, so that the review periods align. The committee agreed that doing this for all children and young people would be helpful as it would make things simpler for families [1.4.19].</p><p>There was moderate quality evidence from sub-theme 2.3 that more information and support is needed for children, young people and their families to understand and access available services so the committee recommended that practitioners providing key working support also help children and young people and their families to navigate services and are available between reviews and meetings if additional support is needed [1.15.8]. This aligns with provision of information and signposting, which in the committee’s understanding is a main function of key working support in the SEND Code of Practice (2015). There was moderate quality evidence from sub-theme 16.1 that the continuity of key workers, particularly during transition to adult services, is important for consistency and that children and young people felt negatively where key worker support ended prematurely. The committee agreed that staff turnover is inevitable so it is not plausible to recommend that there are not any changes in who provides key working support, but that organising a good handover [1.15.9] and having a contingency plan in place to maintain consistency [1.15.11] should help minimise the impact of a change in practitioner on children and young people. They also noted, based on their experience, that there are some families who do not have a permanently fixed location and move frequently. In such instances there can be difficulties with effective coordination of care and support and timely transfer of information resulting in a detriment to the care and support received by the child or young person. The committee agreed this would be a potential equalities issue and so recommended that the practitioner who provides key working support should be responsible for identifying practitioners in the families new area to share relevant information with, to ensure continuity of care and support and that the family and carers should be given a copy of the information. Also that practitioners in the current area should be informed that the child is moving area [1.15.10].</p><p>Low quality evidence in sub-theme 6.6, noted that practitioners reported that there was a lack of clear pathways for referral between services and that joint working only happened on an ad hoc basis. This reflected the experience of the committee. They were confident that making the processes for referral more effective would help practitioners provide effective and co-ordinated care and support to disabled children and young people with severe complex needs. They made recommendations on how to do this. [1.17.5]. There was high quality evidence from sub-theme 7.5 that practitioners reported discrepancies in which services could access online electronic patient records and that they believed being able to access such records would improve joint working and increase information sharing and identification of disabled children and young people. However, whilst electronic patient records are kept within services, there is currently no established inter-agency record system and the development of such a system would have a significant resource impact and require careful consideration around issues of data protection. Therefore, the committee agreed that it was not possible to make a recommendation in support of shared electronic patient records but agreed that information that the child or young person has agreed to share should be made available to all services involved in supporting that child or young person [1.1.55]. There was also moderate quality evidence from sub-theme 7.1 that some practitioners felt they did not have the opportunity to contribute relevant information that they had about a child or young person. Therefore, the committee recommended that people make use of all information available when conducting assessments in order to build a comprehensive picture of the child or young person’s needs [1.3.13]. One specific area of information sharing highlighted by the moderate quality evidence in sub-theme 7.6 was the development and sharing of a behaviour management plan. Families reported that this provided benefit in terms of helping the child or young person to acquire new skills and providing direction for those newly involved with the child or young person. Given the fact that not all children and young people with severe complex needs will require a behaviour management plan, the committee did not think it was appropriate to recommend that specialised care plans should be developed. However, they agreed that when specialised care plans have been agreed, it would be sensible to share these with all practitioners working with that child or young person to improve their knowledge and understanding of their needs and ensure a consistent approach is used across settings. Equally it would be sensible to share such specialised care plans with the child or young person and their parents and carers [1.1.56]. This was supported by moderate quality evidence from sub-theme 1.2 in evidence report M that using a consistent approach when interacting with children and young people was beneficial, in terms of being more predictable and helping them to generalise across different settings. The committee discussed that some services may have access to shared care records or digital systems where such care plans could be recorded, which would reduce the need for manually sharing plans. However, as discussed above, there is currently no established inter-agency record system so it is important that care plans are also shared outside of these systems.</p><p>There was moderate and high quality evidence from sub-themes 3.1 and 8.3 that children, young people and their families reported good working relationships with practitioners when they were in regular contact and kept informed, and that children and young people experienced anxiety when they didn’t know what was happening. There was also low to high quality evidence from sub-themes 2.3, 2.4 and 2.5 in another qualitative review (evidence report A) that service users needed more information and advice about people’s roles and aspects of the child or young person’s care and that information was often outdated. Therefore, the committee agreed it was important that children, young people and their families are provided with up-to-date information about the care and support they are receiving, and informed about the reason for any delays or changes [1.1.23]. This was further supported by moderate evidence from sub-themes 1.6, 4.2 and 6.3 in evidence report A which showed that families felt stressed and frustrated by the lack of information around delays, whilst families that were kept informed felt more positively. There was also moderate quality evidence from sub-theme 3.1 that children and young people and their families valued when practitioners used the same approach that families had been using at home. The committee discussed the importance of consistency, as highlighted by sub-theme 1.2 in evidence report M, if the approaches used have been beneficial, and made a recommendation in support of this. The committee also agreed that it was important to avoid approaches that had been used in the past by families and found not to work well [1.1.12]. Evidence from sub-theme 3.1 also showed that children, young people and their families valued when information was provided in a non-directive way. The committee discussed that this is part of good practice and allows people to consider their options based on factual information. However, they acknowledged that there are situations where it will not be possible to offer a choice, for example where there are statutory requirements. Therefore, they focused the recommendation on providing information whilst tailoring the extent to which direction is given, whilst valuing the experience and perspective of families and carers [1.1.14]. This was supported by moderate quality evidence from sub-theme 9.4 in evidence report A that parents praised when practitioners valued their expertise.</p><p>In sub-theme 3.2, there was moderate quality evidence that parents did not always think it was appropriate for them to be involved in making decisions about their child’s care due to limited knowledge and expertise. The committee discussed that, in their experience, there is variation in how involved parents feel able or are willing to be and, therefore, recommended that this is discussed with parents. They also acknowledged that families may change their minds about the level of involvement they want at different times in their child’s journey [1.6.3]. However, the committee acknowledged that this does not give parents the right to give up parental responsibility, and they will have to consent to the final decision even if they decided to be guided by professional advice without having an in depth discussion about all available options. They therefore recommended that information is provided to children, young people and their parents to enable them to contribute to decision making as fully as possible [1.1.45]. There was moderate quality evidence from sub-theme 5.8 that personal budgets and direct payments can increase flexibility and give families greater choice about what services they use, but that it also created additional responsibility for the family. Further, some parents reported they were not sure if they were able, or wanted, to take on the responsibility and questioned whether they had sufficient knowledge to make care decisions and if the receipt of personal budgets and direct payments would impact ongoing professional involvement. The Special Educational Needs (Personal Budgets) Regulations 2014 requires the provision of information on personal budgets to the child’s parent or young person for those who have an EHC plan or are being issued with one. Therefore the committee made a strong recommendation for local authorities to provide children, young people and their families with information about personal budgets (including personal health budgets) and direct payments to help them decide if they would like to receive these [1.5.1]. In the committee’s experience, when services are commissioned through direct payments and families become the commissioners of care, there can be loss of coordination between support purchased through direct payments and statutory support provided directly through health and social care providers. Therefore, the committee recommended that local authorities and health commissioners continue to ensure services coordinate even if they have been commissioned using direct payments [1.5.2]. If this is not done, then this would likely increase the demands on families to coordinate care, which has already been highlighted in the evidence above (sub-themes 12.1 and 12.2 in this report and sub-theme 4.2 in evidence report A) as taking a considerable amount of time. The committee were aware that personal budgets are mandatory for people aged 18 and over who have a care and support plan, but they have a choice about whether they receive this budget as a direct payment and, therefore, have control of the funds or if this remains with the local authority. They agreed it was important to have a recommendation to make people aware of this as, in their experience, the difference between personal budgets and direct payments is not well understood which may lead to families being provided with inaccurate information and unable to make informed decisions [1.5.3]. Moderate quality evidence from sub-theme 3.1 highlighted that families value professionals who had good communication styles, including being non-judgemental and non-directive. In addition, there was evidence from sub-theme 3.1 in evidence report A that families appreciated when practitioners tailored their communication style to suit the topic of conversation. Therefore, the committee made a recommendation in support of using empathetic and supportive language [1.1.13]. The committee agreed that it was important that children, young people and their families and carers are asked for feedback about how well services have worked with them as their perception of practitioner’s behaviour and communication may differ from the views of the practitioners themselves [1.15.28].</p><p>Similarly, it is valuable to ask children, young people and their families and carers about how well services have worked with each other because of the different perspective they may have on this, compared with practitioners [1.15.27]. Finally, the committee agreed that there needs to be processes in place for addressing the feedback if children, young people and their families and carers are not happy with how services have worked with them or each other, so that improvements can be made [1.15.29].</p><p>There was low quality evidence from sub-theme 4.1 that families can be reluctant to engage with social care services, due to either fear that social service involvement could lead to children being removed from the home or because of perceived stigma. The committee discussed that there is confusion between the different aspects of social care services and that some people, including practitioners working in other services, are more aware of child protection social care services that are involved in safeguarding issues, than family support services which are there to provide support for children and young people with social service needs. Therefore, the committee agreed that it was important to find out what families know about social care services at the point that social care involvement is suggested, and that the difference between child protection social services and broader family support services are explained [1.2.6]. The committee were confident that explaining this information would help to alleviate concerns and increase uptake of social care support, resulting in better provision for the child or young person. This would be particularly relevant for those with characteristics associated with vulnerability and stigma (e.g. travellers).</p><p>There was moderate quality evidence from sub-theme 4.4 that children, young people and their parents, and practitioners, reported that some practitioners have low expectations of disabled children and young people and are not good at recognising their ambitions or capabilities. This is supported by moderate quality evidence from sub-theme 1.4 in evidence report M, which agreed that disabled children and young people are often underestimated. Further, in the committee’s experience, many disabled children and young people with severe complex needs may not have had the opportunity to consider what is possible for them in terms of future aspirations in relation to employment, independence, relationships and community involvement due to a lack of disabled role models. This lack of awareness of what might be possible can lead to restricted goals and ambitions and outcomes in an EHC plan that do not reflect the genuine strengths, abilities and interest of children and young people. Therefore, the committee recommended that children and young people are encouraged to express their goals and ambitions, and explore their strengths, abilities and interests, and that these are focused on when deciding outcomes for the EHC plan [1.4.1]. Further, they highlighted that expectations should be based on the child or young person’s goals and ambitions, not on their condition or profile of needs [1.4.4]. This is consistent with the committee’s understanding of the SEND Code of Practice (2015), which places an emphasis on supporting children and young people to realise their ambitions. Children, young people and their parents reported in sub-theme 5.7 (moderate quality evidence) that sometimes there could be limited opportunities for service users to engage in activities and interact with practitioners when attending respite services. The committee agreed that social inclusion is important for everyone and that some of the best opportunities for social activities for disabled children and young people may come from attendance at short break and respite services as support may be needed to enable the child or young person to engage in activities. Therefore, they agreed that these services should be used for the benefit of the child or young person, which may include running group social activities, for example, and not just for the purpose of providing a break for families [1.7.6]. Provision of short break services is a statutory requirement.</p><p>There was moderate quality evidence from sub-theme 8.1 that service providers and service users felt there was a lack of urgency to provide support until the child or young person reached crisis point, but that reaching a crisis point could be avoided if support was provided earlier. The committee noted the evidence aligned with their experience and suggested that a lack of resourcing and prioritising and statutory obligations all impacted on the situation. The committee had also experienced issues with threshold criteria for accessing support meaning that support only became available after a crisis point had been reached. Therefore, the committee felt strong recommendations were needed in support of early interagency involvement to identify, assess and address needs [1.17.1] and to provide support as soon as the need has been identified to avoid children and young people reaching a crisis point. In addition, the committee agreed that the transition from interim support to the EHC plan should be simple as possible to avoid disruption to the support provided [1.3.10]. In further support of these recommendations, they noted that the SEND Code of Practice (2015) specifies that “where particular services are assessed as being needed…, their provision should be delivered in line with the relevant statutory guidance and should not be delayed until the EHC plan is complete”.</p><p>There was high quality evidence from sub-theme 8.4 that additional assessment caused delays when implementing EHC plans, for example schools conducting their own assessments of the child or young person. The committee noted that implementing the EHC plan was key to providing the necessary care, so recommended that support should be provided, based on identified needs, whilst the EHC needs assessment is undertaken [1.3.11].</p><p>There was high quality evidence from sub-theme 9.2 that service providers reported there is a lack of understanding of social, emotional and mental health needs (SEMH), and difficulty providing evidence of these needs, which subsequently led to barriers in accessing EHC plans for children and young people with SEMH needs. It was agreed that training practitioners to help them recognise SEMH needs and internalising symptoms would help to address this issue, and the committee made a recommendation supporting this [1.15.16]. The committee also noted, based on their experience, that there is a high demand for access to mental health services and that this was also likely to be a barrier. However, they were not able to make any recommendations in this area as it is not an issue exclusive to children and young people with severe complex needs and so is outside the scope of this guideline.</p><p>There was low quality evidence from sub-theme 9.4 that service users felt the process of getting an EHC plan took too long, and required a lot of effort on their part. There was also moderate quality evidence from service providers in sub-theme 9.8 that there is a lack of transparency about decision making for EHC plans, timescales for review and processes for appeal or complaints. The Children and Families Act 2014 and the SEND Regulations 2014 set out timescales for each stage of the process for EHC needs assessments and EHC plans, so the committee could not make different recommendations on this. In light of the evidence suggesting that these time limits may not be reached in practice, supported by their own experience, the committee made recommendations to highlight the requirements in the legislation [1.3.14]. Whilst the evidence was only about the EHC plan process, the committee agreed, based on their experience that having increased transparency about what services do and how they work together would improve the child or young persons’ understanding of how to navigate the system. It would also increase their confidence in the care and support they are receiving an empower them to be more assertive about their needs. Therefore, the committee agreed services should consider doing this. They thought the SEND Local Offer could be used to facilitate transparency because there is a requirement for the SEND Local Offer to share the pathways to access support [1.15.15].</p><p>There was low quality evidence from sub-theme 9.5 that service users felt the child or young person had to reach a crisis point, such as exclusion from school or the family home, before an EHC plan was considered necessary. The committee agreed that empowering families to make a request for an EHC needs assessment, providing information on how to get help with this process, the criteria for when a local authority should carry out an EHC needs assessment, and how to appeal if the local authority decides an EHC assessment or plan is not needed, may aid in preventing the child or young person from reaching crisis point. Whilst all of this information is already in the SEND Code of Practice (2015), the committee agreed that practitioners being able to provide this information would make it more accessible [1.3.1], based on the moderate quality evidence from sub-theme 2.3 that more information and support was needed to empower families to access services. The committee also agreed that any thresholds or eligibility criteria used by local authorities for their EHC needs assessment process should be included in the SEND Local Offer so families have easy access to this information [1.17.14].</p><p>There was moderate quality evidence from sub-theme 9.6 that both service providers and service users lacked understanding of the EHC plan process. Further, moderate quality evidence from sub-theme 12.5 suggested that the workloads of service providers were negatively impacted by the cumbersome and onerous nature of paperwork, and challenges when communicating with, and coordinating between services. A lack of training or knowledge from individuals about how to support development of EHC plans was seen as a concern, which service providers felt led to discrepancies and a lack of consistency. As local authorities hold responsibility for the EHC process, and producing good quality EHC plans is crucial to ensuring disabled children and young people with severe complex needs get the support that they need, the committee recommended that they provide training for practitioners to help them understand the EHC needs assessment process, how an EHC plan is developed and how to complete relevant templates and provide advice and information to support the development of the EHC plan [1.17.11]. They also recommended local authorities provide training on how to write EHC plans for practitioners in their special educational needs and disability (SEND) team [1.17.12]. The committee also agreed it was important to discuss expectations with children and young people and their parents and carers and explain the purpose and process of EHC needs assessment and EHC plans, including how they can be involved, how their views will be incorporated, which services will be involved, how long it should take to get an EHC plan (the 20 week period specified in the recommendation for the EHC plan process is taken from the SEND Regulations 2014) and what will happen if an EHC plan is not issued [1.3.5]. Based on their experience that many EHC plans are not produced within the statutory timeframe the committee also agreed it was important to inform children and young people and their parents and carers if this timeline will not be met and provide a progress update (so that families do not have to seek updates in order to get this information) [1.3.6]. This was consistent with high quality evidence from sub-theme 4.1 in evidence report M that sometime practitioners had to manage parents’ expectations. There was moderate quality evidence from sub-theme 9.7 that service providers lacked the expertise and knowledge needed to complete the EHC plan. The committee discussed that in practice EHC plans are often based on old information and therefore do not fulfil their purpose. The committee agreed that it is the responsibility of local authorities to ensure that EHC plans are based on up-to-date information, and are informed by information and advice provided by practitioners who have the right expertise and knowledge of the child or young person, and a recommendation was made to this effect [1.4.12]. Again, the committee made a strong recommendation because preparing good quality EHC plans is crucial to ensuring disabled children and young people with severe complex needs get the support that they need. There was high quality evidence from sub-theme 9.11 that service providers experienced revisions to EHC plan paperwork and processes occurring without being involved or provided with notice of changes, which can result in additional work to transfer completed EHC plans to a new version. The committee reflected that this does happen in practice and is a source of inefficiency and frustration in the EHC plan process. Further, if additional work needs to be done to transfer plans onto new documents, this could cause delays in the provision of support for children and young people. The committee therefore recommended that local authorities should notify services and commissioners before making changes to their processes for producing EHC plans, and should consider involving services and commissioners with these changes to minimise any disruption to the provision of care and make the best use of limited resources by reducing duplication of effort [1.17.9; 1.17.10]. There was also moderate quality evidence from sub-theme 6.5 that inconsistency across paperwork and procedures used in different services, regions and local authorities caused difficulties for centrally based services referring to local services, or when families lived in different counties or local authorities to where the child or young person attended school. The committee discussed whether it was possible to standardise paperwork or recommend that paperwork is not required to be submitted in a specific format as long as it has the required content but agreed that this would not be feasible and would either limit collaboration with children, young people and their families and carers when designing paperwork (if standardised paperwork was used) or undermine attempts to improve the quality of information submitted for EHC plans (if requirements were removed). Therefore, they did not make recommendations in this area. There was moderate quality evidence from sub-theme 10.1 that both service users and service providers felt that the level of support provided did not always reflect the needs of the child, young person or their family and that those individuals who were more assertive in their communication seemed more likely to get the support they wanted compared to individuals who were more passive or less proactive. The committee discussed that as part of the needs assessment, the views of the child, young person and their family should be gathered, however they had experienced this not always happening in practice. Therefore, the committee felt it import to recommend that practitioners should help families to express their views in order to gauge the views of all children, young people and their families, not just those who were assertive and a record be kept of this information during the assessment process [1.3.9]. This is consistent with legislation in the Children and Families Act 2014 and the SEND Regulations 2014.</p><p>There was moderate quality evidence in sub-theme 11.1 from both service users and service providers that professionals and staff lacked the necessary skills and knowledge to work effectively to meet the needs of children and young people. The committee were aware of current relevant guidance from the Care Quality Commission, General Medical Council, the Nursing and Midwifery Council, the Health and Care Professionals Council and the professional bodies and organisations that align to these about training and competency in delegated clinical tasks and therefore recommended these are followed by registered health professionals when training support workers to enable them to effectively meet children and young people’s needs [1.15.24]. The committee noted that support workers can be delegated clinical care tasks for children and young people with severe complex needs. In these instances, employers would need to follow the same guidance, and a recommendation was made to reflect this [1.15.25]. If this guidance is not followed, then clinical tasks may not be performed safely and there would be the potential for harm to the child or young person. There was very low quality evidence in sub-theme 11.3 from service providers that multi-agency training was important to bridge the gaps between professionals in different services, increase knowledge, awareness and skillsets, and to get everyone on the same page. The committee relayed experience of individuals working in silos with narrow focus, which had the potential to lead to conflicting advice and a subsequent detriment to the child or young person. The committee agreed that it was important for the staff of all three services to work collaboratively particularly in relation to the production of EHC plans, given their central importance in the SEND Code of Practice (2015). Therefore, the committee recommended that education, health and social care services work together to ensure that staff understand how their contributions affect EHC needs assessment, EHC plan outcomes, and how individual staff contributions fit together to show what support the child or young person needs [1.15.20]. This is consistent with the committee’s understanding of the SEND Code of Practice (2015) that services should consider whether combined training would help professionals to meet the needs of children and young people in a more personalised way. There was high quality evidence from sub-theme 11.4 that service providers valued the opportunity to learn from other services, particularly through observation, modelling and ongoing supervision and feedback. The committee agreed to recommend that services provide practitioners with opportunities to observe other practitioners working with the child or young person as this would facilitate integrated working [1.15.19].</p><p>There was moderate quality evidence from sub-theme 12.4 that service providers reported that EHC plans were not always followed through and viewed as a live document that needed review and updating, and service users reported that there was a lack of implementation of EHC plans with support services listed in plans not being received. The committee acknowledged that the SEND Regulations 2014 specify what information must be included in an EHC plan and the SEND Code of Practice (2015) provides guidance on detailing the resources needed to provide the support specified in a child or young person’s EHC plan, however their experience aligned with the evidence that this guidance is not always followed in practice. In addition, advice and information contributed by different services needs to be put in specific sections of the EHC plan when Local Authority Officers write it, so that commissioners can see which services need to be provided from which budget lines. In the committee’s experience this is often done poorly, with a lack of distinction between what practical and therapeutic support is needed to educate or train the child or young person and what health and medical support they need to stay well. This causes issues with support being provided so they made recommendations to highlight the correct sections to put the information in when writing EHC plans and for commissioners to use this information when planning what services to provide [1.4.9; 1.4.10].</p><p>There was moderate quality evidence from sub-theme 15.1 that a lack of specific, measurable, attainable, relevant and timely (SMART) outcomes in EHC plans made it unclear what support will be needed, and who is responsible for providing it. Both service users and service providers felt that EHC plans lacked clarity in dictating responsibility and accountability for ensuring the delivery of service provisions, whilst the inclusion of SMART outcomes in EHC plans would enable service users and providers to hold services accountable and ensure all the necessary provisions are being delivered to support the child or young person. Therefore, the committee recommended that the special education, health and social care support required to help children and young people achieve the outcomes in their EHC plans, should be specified. Further the committee pointed out the outcome sandwich as a helpful tool that could be used to assist practitioners to write outcomes that are meaningful. The committee noted that in their understanding, the SEND Code of Practice (2015) recommends outcomes in EHC plans should be SMART but that this is not universally done which leads to issues as described in the evidence. Therefore they highlighted the relevant paragraphs of the SEND Code of Practice (2015) to facilitate their implementation [1.4.3; 1.4.11].</p><p>There was low quality evidence from sub-theme 15.2 that service users felt concerned that a loss of service provision may occur as a result of recognising the strengths of the child or young person in their EHC plan. The committee agreed that this was a concern, particularly when a child or young person still relies on the support. The committee discussed the example of a child or young person beginning to making some independent journeys to school as part of an independent training package, but still requiring support with journeys on other occasions, such as transportation to a specialist after-school sports club. Therefore, the committee made a strong recommendation that the level of support specified in the EHC plan should only be reduced if the child or young person no longer requires it, otherwise there was a risk that any improvements made would not be maintained [1.4.20].</p><p>There was moderate quality evidence from sub-theme 16.1 that a continued key worker or lead professional was important to maintain consistency and a positive relationship between service users and service providers at transition. Additionally, moderate quality evidence in sub-theme 17.1 from service users and service providers reported that preparations for adulthood and decision making for transition is often insufficient, inconsistent and left too late. It was felt by service users and providers that there was a lack of overarching support or expertise and a lack of coordination between services. The committee agreed that a named worker who oversees and coordinates transition would be effective in bridging the gap in coordination across education, health and social care and would mitigate the need for service users to act as go-betweens. Additionally, the committee agreed that consistency was necessary and felt that in order to avoid delays, detriments or the ceasing of care for the young person when transitioning, the named worker should hand over their responsibilities to someone in adult services and provide the young person and their family with relevant contact details [1.8.12]. The committee also noted that these concepts align with recommendations already made in the NICE guideline on transition from children’s to adult’s services for young people using health or social care services.</p><p>There was low quality evidence in sub-theme 17.2 that service users experienced differences in thresholds when transitioning from child to adult services and access to some adult services was dependent on access to other services. In the committee’s experience there is variation between services in the age at which the transfer occurs between child and adult services. This results in an uncoordinated process where adherence to age-related service thresholds creates ‘blind spots’ in the services young people can access because they are ‘too old’ for child services but ‘too young’ for adult services. This creates a significant detriment to the care and support young people receive and potentially exposes them to harm (for example young people receiving their health care on adult wards with much older people or where a child is on protection plan but they are too old to go into child services and too young to go into adult services so they end up staying at home in a risky situation). The committee were confident that a consistent approach across services was needed to prevent these blind spots from happening. Based on their experience they recommended that education, health and social care services work with the young person and their families and carers, to coordinate the age of non-statutory transitions to adult services [1.8.6].</p><p>There were a number of sub-themes where the committee did not make a recommendation based on the qualitative evidence alone. For some sub-themes a recommendation was not made because the evidence from the sub-theme was consistent with a recommendation from other review questions, therefore the evidence was used as further support for those recommendations. These included sub-themes 2.1 (recommendation 1.2.8, see evidence report G), 6.4 (recommendation 1.8.14, see evidence report A), 7.2 (recommendations 1.1.52 and 1.1.54, see evidence report M), 14.1 (recommendation 1.3.11, see evidence report C) and 14.3 (recommendation 1.3.3, see evidence report C). For other themes, recommendations were not made because the committee agreed that the issue raised by the evidence would be reduced as a result of recommendations made elsewhere in the guideline (sub-themes 1.7, 6.2, 6.7, 7.3, 7.4, 8.5, 10.3, 11.2, 12.2, and 14.4). For other themes, the evidence available was not sufficient to support a recommendation because it was very low quality evidence for an intervention or service that would potentially have a large resource impact (sub-themes 5.1 and 10.4), did not provide enough information about how to address the issue raised by the evidence (sub-themes 4.2, 4.3, 5.6, 12.3 and 13.1), was a comment on an intervention without evidence of its effectiveness (sub-themes 11.5, 14.2, 14.5 and 15.4), or the population covered by the evidence was outside the scope of the guideline (sub-theme 5.4). Finally, there were some themes (sub-themes 5.3, 8.2, 9.1, 9.3, 9.9, 9.10, 10.2 and 15.3) commenting on the perceived impact of EHC plans or extending the SEND service provision up to age 25. These are now statutory requirements and so it was outside the remit of this guideline to make recommendations in these areas.</p></div><div id="niceng213er11.s1.1.28.2"><h5>1.1.1.9. Cost effectiveness and resource use</h5><p>No existing economic evidence was identified in this area and no economic analysis was undertaken.</p><p>The committee discussed cost implications associated with involving interpreters to assist with communication and explained that within health, equality of access regulations would cover this and provision of independent interpreters is a requirement. In education, whilst there is no requirement for interpreters to be provided, this function is often undertaken informally by a family member. Where this is not possible an independent interpreter will be provided. In social care it is common practice to use interpreters where needed. Therefore the recommendation would not represent a new cost.</p><p>The committee discussed resource implications associated with local authorities having to provide practitioners with training to understand the EHC needs assessment process and plan development. The committee explained that such training already exists. Also, the committee noted that services could do this in a variety of low-cost ways, for example remotely, pre-recorded sessions, as part of an induction package. The committee explained that it could reduce conflicting advice and encourage all three sectors to work together more efficiently. The committee was of the view that this could result in overall savings to services, for example by reducing duplication.</p><p>The committee discussed staff training, ongoing supervision, and competency assessment concerning carrying out delegated clinical tasks. The committee explained that other statutory bodies and professional governance organisations have guidance around this and it is current practice for this to be done - the recommendations serve to make this more explicit. Therefore they did not consider there would be substantial resource implications from implementing these recommendations. The committee noted that this recommendation might prevent the breakdown in cross-organisational working and prevent critical incidents that could have substantial financial implications to services and detrimental outcomes for children and young people.</p><p>The committee discussed training for practitioners to recognise social, emotional and mental health needs. Similarly, the committee explained that such training could be delivered in various low-cost ways, for example, remotely, pre-recorded sessions, as part of an induction package. Also, in some areas, such training already exists. The committee explained that the recommendation should result in those with social, emotional and mental health needs being identified earlier and facilitate earlier, less intensive intervention. It should also help prevent children and young people getting to crisis which is detrimental to their quality of life and more costly to address. The committee also noted that educational mental health practitioners (EMHPs) would be able to address low-level needs.</p><p>The committee explained that existing frameworks and processes (for example on training and competency, information sharing, monitoring and review) produced and used by local authorities and health commissioners to ensure the quality of statutory support commissioned directly through health and social care services will need to be applied to support commissioned by families through direct payments. This will ensure that all services supporting children and young people will receive the information needed to provide effective advice and support.</p><p>The committee explained that local authorities provide funding for social activities. However, transport costs to get a disabled child or young person to social activity aren’t generally included. This practice limits their ability to access that provision. The requirement to assess the full cost of providing the services agreed is there for health and education, but not in relation to social care provision, i.e. there is no obligation to provide for things such as travel costs to social activities. The practice is that direct payments do not cover such costs. There is often a standardised hourly rate for a direct payment that doesn’t take into account transport and those other aspects of support that need to happen for children and young people to access social services. As a result, the recommendation on this may mean that social services will have to assess such costs, potentially taking more time. The committee explained that the recommendation is about assessment, and in the case of social activities within social care, there is no requirement to provide for such costs and that there are local area thresholds for those provisions. However, the committee was hopeful that this might encourage services to think about their approach and provision differently, i.e. consider making provision for such costs in their direct payments or personal budgets. This may potentially result in an increase in the value of direct payments or personal budgets.</p><p>The committee explained that all other recommendations reflect current practice, are ways to improve knowledge or communication or re-iterate or provide supplementary guidance to requirements of the legislation or SEND Code of Practice (2015). Therefore, they are not expected to result in additional resource use.</p></div></div><div id="niceng213er11.s1.1.29"><h4>Recommendations supported by this evidence review</h4><p>This evidence review supports recommendations 1.1.12 - 1.1.14, 1.1.21 - 1.1.23, 1.1.25, 1.1.39, 1.1.41, 1.1.42, 1.1.45, 1.1.55, 1.1.56, 1.2.6, 1.3.1, 1.3.2, 1.3.5, 1.3.9 – 1.3.11, 1.3.13, 1.3.14, 1.4.1, 1.4.3, 1.4.4, 1.4.9 – 1.4.11, 1.4.12, 1.4.19 - 1.4.22, 1.5.1 – 1.5.3, 1.6.3, 1.7.6, 1.8.6, 1.8.12, 1.14.1, 1.15.1, 1.15.6 - 1.15.8, 1.15.9 - 1.15.11, 1.15.14 - 1.15.16, 1.15.19, 1.15.20, 1.15.24, 1.15.25, 1.15.27 – 1.15.29, 1.16.2, 1.17.1, 1.17.3, 1.17.5, 1.17.8 - 1.17.12, 1.17.14, 1.17.15. Other evidence supporting these recommendations can be found in the evidence reviews on Views and experiences of service users (evidence report A), Supporting participation in education and social activities (evidence report F), Views and experiences of service providers (evidence report M), Commissioning, practice and service delivery models (evidence report N).</p></div></div><div id="niceng213er11.s1.rl.r1"><h3>References – included studies</h3><ul class="simple-list"><div id="niceng213er11.s1.rl.r1.1"><h4>1.1.1.10. Qualitative</h4><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref1"><p id="p-868">
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<strong>Adams 2017</strong>
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</p>Adams, L., Tindle, A., Basran, S., Dobie, S., Thomson, D., Robinson, D., Shepherd, C., Experiences of Education, Health and Care plans: a survey of parents and young people, London: Department for Education, 2017. Available at: <a href="http://dera.ioe.ac.uk/28758/1/Education__health_and_care_plans_parents_and_young_people_survey.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">http://dera<wbr style="display:inline-block"></wbr>​.ioe.ac.uk<wbr style="display:inline-block"></wbr>​/28758/1/Education_<wbr style="display:inline-block"></wbr>​_health_and_care_plans<wbr style="display:inline-block"></wbr>​_parents_and_young_people_survey.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref2"><p id="p-869">
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<strong>Adams 2018</strong>
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</p>Adams, L., Tindle, A., Basran, S., Dobie, S., Thomson, D., Robinson, D., Codina, G., Education, Health and Care plans: a qualitative investigation into service user experiences of the planning process: research report, 85, London: Department for Education, 2018. Available at: <a href="http://hdl.handle.net/10545/622892" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">http://hdl<wbr style="display:inline-block"></wbr>​.handle.net/10545/622892</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref3"><p id="p-870">
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<strong>Boesley 2018</strong>
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</p>Boesley, L., Crane, L., ‘Forget the health and care and just call them education plans’: SENCOs’ perspectives on education, health and care plans, Journal of Research in Special Educational Needs, 18, 36–47, 2018</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref4"><p id="p-871">
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<strong>Boyce 2015</strong>
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</p>Boyce, T., Dahlmann-Noor, A., Bowman, R., Keil, S., Support for infants and young people with sight loss: a qualitative study of sight impairment certification and referral to education and social care services, BMJ open, 5, e009622, 2015 [<a href="/pmc/articles/PMC4691759/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4691759</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26685033" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26685033</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref5"><p id="p-872">
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<strong>Brooks 2013</strong>
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</p>Brooks, F., Bloomfield, L., Offredy, M., Shaughnessy, P., Evaluation of services for children with complex needs: mapping service provision in one NHS Trust, Primary Health Care Research & Development, 14, 52–62, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/22784821" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22784821</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref6"><p id="p-873">
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<strong>Children’s Commissioner for Wales 2018</strong>
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</p>Children’s Commissioner for Wales, ‘Don’t hold back’: transitions to adulthood for young people with learning disabilities, Swansea: Children’s Commissioner for Wales, 2018. Available at: <a href="https://www.childcomwales.org.uk/wp-content/uploads/2019/10/Dont-Hold-Back.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://www<wbr style="display:inline-block"></wbr>​.childcomwales<wbr style="display:inline-block"></wbr>​.org.uk/wp-content<wbr style="display:inline-block"></wbr>​/uploads/2019/10/Dont-Hold-Back.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref7"><p id="p-874">
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<strong>Cohen 2017</strong>
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</p>Cohen, W., McCartney, E., Crampin, L., 22q11 deletion syndrome: Parents’ and children’s experiences of educational and healthcare provision in the United Kingdom, Journal of Child Health Care, 21, 142–152, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/29119811" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29119811</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref8"><p id="p-875">
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<strong>Council for Disabled Children 2018</strong>
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</p>Council for Disabled Children, Hamblin
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E., ‘Realistic positivity’: understanding the additional needs of young children placed for adoption, and supporting families when needs are unexpected, London: Council for Disabled Children, 2018. Available at: <a href="https://www.basw.co.uk/resources/realistic-positivity-understanding-additional-needs-young-children-placed-adoption-and" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://www<wbr style="display:inline-block"></wbr>​.basw.co.uk<wbr style="display:inline-block"></wbr>​/resources/realistic-positivity-understanding-additional-needs-young-children-placed-adoption-and</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref9"><p id="p-876">
|
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<strong>Dillenburger 2016</strong>
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</p>Dillenburger, K., McKerr, L., Jordan, J. A., BASE project (vol.4): qualitative data analysis, Belfast: Queen’s University Belfast, School of Education, The Centre for Behaviour Analysis, 2016</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref10"><p id="p-877">
|
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<strong>Fox 2017</strong>
|
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</p>Fox, F., Aabe, N., Turner, K., Redwood, S., Rai, D., “It was like walking without knowing where I was going”: A Qualitative Study of Autism in a UK Somali Migrant Community, Journal of Autism and Developmental Disorders, 47, 305–315, 2017 [<a href="/pmc/articles/PMC5309314/" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5309314</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27858263" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27858263</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref11"><p id="p-878">
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<strong>Griffith 2013</strong>
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</p>Griffith, G. M., Walker-Jones, E., Fitzpatrick, H., Goodson, L., Pickering, N., Wimpory, D., Cernyw, E., Hastings, R. P., Receiving an assessment and a potential diagnosis on the autistic spectrum: a thematic content analysis of parental experiences, Good Autism Practice, 14, 59–68, 2013</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref12"><p id="p-879">
|
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<strong>Hurt 2019</strong>
|
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</p>Hurt, L., Langley, K., North, K., Southern, A., Copeland, L., Gillard, J, Williams, S., Understanding and improving the care pathway for children with autism, International Journal of Health Care Quality Assurance, 32, 208–223, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30859873" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30859873</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref13"><p id="p-880">
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<strong>Hutton 2018</strong>
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</p>Hutton, E., King, A., Parent/carer views on personal health budgets for disabled children who use rehabilitation therapy services, Disability & Society, 33, 254–271, 2018</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref14"><p id="p-881">
|
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<strong>Kaehne 2013</strong>
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</p>Kaehne, A., Catherall, C., User involvement in service integration and carers’ views of co-locating children’s services, Journal of Health Organization and Management, 27, 601–17, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/24341179" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24341179</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref15"><p id="p-882">
|
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<strong>Karim 2014</strong>
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</p>Karim, K., Cook, L., O’Reilly, M., Diagnosing autistic spectrum disorder in the age of austerity, Child: Care, Health and Development, 40, 115–123, 2014 [<a href="https://pubmed.ncbi.nlm.nih.gov/22712808" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22712808</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref16"><p id="p-883">
|
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<strong>Kiernan 2019</strong>
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</p>Kiernan, J., Mitchell, D., Stansfield, J., Mothers’ perspectives on the lived experience of children with intellectual disability and challenging behaviour, Journal of Intellectual Disabilities, 23, 175–189, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/29153009" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29153009</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref17"><p id="p-884">
|
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<strong>Kirk 2014</strong>
|
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</p>Kirk, S., Fraser, C., Hospice support and the transition to adult services and adulthood for young people with life-limiting conditions and their families: a qualitative study, Palliative Medicine, 28, 342–52, 2014 [<a href="https://pubmed.ncbi.nlm.nih.gov/24142761" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24142761</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref18"><p id="p-885">
|
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<strong>McCartney 2017</strong>
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</p>McCartney, E., Muir, M., School leavers with learning disabilities moving from child to adult speech and language therapy (SLT) teams: SLTs’ views of successful and less successful transition co-working practices, Journal of Research in Special Educational Needs, 17, 168–178, 2017</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref19"><p id="p-886">
|
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<strong>McConkey 2013</strong>
|
|
</p>McConkey, R., Gent, C., Scowcroft, E., Perceptions of effective support services to families with disabled children whose behaviour is severely challenging: a multi-informant study, Journal of Applied Research in Intellectual Disabilities, 26, 271–83, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/23408538" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23408538</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref20"><p id="p-887">
|
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<strong>McKean 2017</strong>
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</p>McKean, C., Law, J., Laing, K., Cockerill, M., Allon-Smith, J., McCartney, E., Forbes, J., A qualitative case study in the social capital of co-professional collaborative co-practice for children with speech, language and communication needs, International Journal of Language & Communication disorders, 52, 514–527, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/27813256" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27813256</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref21"><p id="p-888">
|
|
<strong>Molteni 2013</strong>
|
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</p>Molteni, P., Guldberg, K., Logan, N., Autism and multidisciplinary teamwork through the SCERTS model, British Journal of Special Education, 40, 137–145, 2013</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref22"><p id="p-889">
|
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<strong>National Autistic Society 2015</strong>
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</p>National Autistic Society, School report 2015, London: The National Autistic Society, 2015. Available at: <a href="https://www.autism.org.uk/~/media/nas/documents/news-and-events/news%20story/sen-report-branded-280815.ashx?la=en-gb" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://www<wbr style="display:inline-block"></wbr>​.autism.org<wbr style="display:inline-block"></wbr>​.uk/~/media/nas/documents<wbr style="display:inline-block"></wbr>​/news-and-events<wbr style="display:inline-block"></wbr>​/news%20story/sen-report-branded-280815.ashx?la=en-gb</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref23"><p id="p-890">
|
|
<strong>Palikara 2019</strong>
|
|
</p>Palikara, O., Castro, S., Gaona, C., Eirinaki, V., Professionals’ views on the new policy for special educational needs in England: ideology versus implementation, European Journal of Special Needs Education, 34, 83–97, 2019</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref24"><p id="p-891">
|
|
<strong>RIP STARS 2018</strong>
|
|
</p>RIP STARS, Defining quality and rights-based Education, Health and Care Plans (EHCPs) for disabled children and young people, Coventry: Coventry University, 2018. Available at: <a href="https://ripstarsnet.files.wordpress.com/2018/10/ripstars-finalreport2018-2.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://ripstarsnet<wbr style="display:inline-block"></wbr>​.files<wbr style="display:inline-block"></wbr>​.wordpress.com/2018<wbr style="display:inline-block"></wbr>​/10/ripstars-finalreport2018-2.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref25"><p id="p-892">
|
|
<strong>Rodriguez 2014</strong>
|
|
</p>Rodriguez, A., King, N., Sharing the care: the key-working experiences of professionals and the parents of life-limited children, International Journal of Palliative Nursing, 20, 165–172, 2014 [<a href="https://pubmed.ncbi.nlm.nih.gov/24763324" ref="pagearea=cite-ref&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24763324</span></a>]</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref26"><p id="p-893">
|
|
<strong>Sales 2018</strong>
|
|
</p>Sales, N., Vincent, K., Strengths and Limitations of the Education, Health and Care Plan Process from a Range of Professional and Family Perspectives, British Journal of Special Education, 45, 61–80, 2018</div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref27"><p id="p-894">
|
|
<strong>Skipp 2016</strong>
|
|
</p>Skipp, A., Hopwood, V., ASK Research, Mapping user experiences of the education, health and care process: a qualitative study, London: Department for Education, 2016. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/518963/Mapping_user_experiences_of_the_education__health_and_care_process_-_a_qualitative_study.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://assets<wbr style="display:inline-block"></wbr>​.publishing<wbr style="display:inline-block"></wbr>​.service.gov.uk<wbr style="display:inline-block"></wbr>​/government/uploads/system<wbr style="display:inline-block"></wbr>​/uploads/attachment_data<wbr style="display:inline-block"></wbr>​/file/518963<wbr style="display:inline-block"></wbr>​/Mapping_user_experiences<wbr style="display:inline-block"></wbr>​_of_the_education<wbr style="display:inline-block"></wbr>​__health_and_care<wbr style="display:inline-block"></wbr>​_process_-_a_qualitative_study.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref28"><p id="p-895">
|
|
<strong>Smith 2014</strong>
|
|
</p>Smith, Lucy, Cameron, Genevieve, Vanson, Tim, Evaluation of the Special Educational Needs and Disability (SEND) Pathfinder Programme: Impact research report: Qualitative research with families (second cohort): Research report, London: Department for Education, 2014. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/346265/RR356A_-_Qualitative_research_with_families.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://assets<wbr style="display:inline-block"></wbr>​.publishing<wbr style="display:inline-block"></wbr>​.service.gov.uk<wbr style="display:inline-block"></wbr>​/government/uploads/system<wbr style="display:inline-block"></wbr>​/uploads/attachment_data<wbr style="display:inline-block"></wbr>​/file/346265<wbr style="display:inline-block"></wbr>​/RR356A_-_Qualitative<wbr style="display:inline-block"></wbr>​_research_with_families.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref29"><p id="p-896">
|
|
<strong>Spivack 2014</strong>
|
|
</p>Spivack
|
|
R., Craston
|
|
M., Redman
|
|
R., Evaluation of the Special Educational Needs and Disability Pathfinder Programme: Thematic report: Collaborative working with social care: Research report, London: Department for Education, 2014. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/342287/RR356D_-_Social_Care_Thematic_Report.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://assets<wbr style="display:inline-block"></wbr>​.publishing<wbr style="display:inline-block"></wbr>​.service.gov.uk<wbr style="display:inline-block"></wbr>​/government/uploads/system<wbr style="display:inline-block"></wbr>​/uploads/attachment_data<wbr style="display:inline-block"></wbr>​/file/342287<wbr style="display:inline-block"></wbr>​/RR356D_-_Social_Care_Thematic_Report<wbr style="display:inline-block"></wbr>​.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref30"><p id="p-897">
|
|
<strong>Taylor 2014</strong>
|
|
</p>Taylor
|
|
J., Stalker, K., Fry, D., Stewart, A., Disabled children and child protection in Scotland: An investigation into the relationship between professional practice, child protection and disability, Glasgow: University of Strathclyde, 2014. Available at: <a href="https://strathprints.strath.ac.uk/46601/1/00447850.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https:<wbr style="display:inline-block"></wbr>​//strathprints<wbr style="display:inline-block"></wbr>​.strath.ac.uk/46601/1/00447850.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref31"><p id="p-898">
|
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<strong>Thom 2014</strong>
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</p>Thom
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G., Agur
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M., Daff
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K., Evaluation of the Special Educational Needs and Disability Pathfinder Programme: Thematic report: Transition and the engagement of post-16 providers: Research report, London: Department for Education, 2014. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/342295/RR356F_-_Transition_and_the_Engagement_of_Post_16_Providers_.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://assets<wbr style="display:inline-block"></wbr>​.publishing<wbr style="display:inline-block"></wbr>​.service.gov.uk<wbr style="display:inline-block"></wbr>​/government/uploads/system<wbr style="display:inline-block"></wbr>​/uploads/attachment_data<wbr style="display:inline-block"></wbr>​/file/342295<wbr style="display:inline-block"></wbr>​/RR356F_-_Transition<wbr style="display:inline-block"></wbr>​_and_the_Engagement<wbr style="display:inline-block"></wbr>​_of_Post_16_Providers_.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref32"><p id="p-899">
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<strong>Thom 2015</strong>
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</p>Thom
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G., Lupton, K., Craston, M., Purdon, S., Bryson, C., Lambert, C., James, N., Knibbs, S., Oliver, D., Smith, L., Vanson, T., The Special Educational Needs and Disability Pathfinder Programme evaluation: Final impact research report, London: Department for Education, 2015. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/448157/RB471_SEND_pathfinder_programme_final_report_brief.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://assets<wbr style="display:inline-block"></wbr>​.publishing<wbr style="display:inline-block"></wbr>​.service.gov.uk<wbr style="display:inline-block"></wbr>​/government/uploads/system<wbr style="display:inline-block"></wbr>​/uploads/attachment_data<wbr style="display:inline-block"></wbr>​/file/448157<wbr style="display:inline-block"></wbr>​/RB471_SEND_pathfinder<wbr style="display:inline-block"></wbr>​_programme_final_report_brief.pdf</a></div></p></li><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref33"><p id="p-900">
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<strong>Young 2018</strong>
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</p>Young, L., Egdell, A., Swallow, V., Qualitative accounts of young-people, parents and staff involved with a purpose-designed, pilot short-break service for 18-24 year olds with life-limiting conditions, Children and Youth Services Review, 86, 142–150, 2018</div></p></li></ul></div><div id="niceng213er11.s1.rl.r1.2"><h4>Other</h4><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er11.s1.ref34"><p id="p-901">
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<strong>Department for Education and Department for Health 2015</strong>
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</p>Department for Education and Department for Health, Special educational needs and disability code of practice: 0 to 25 years. Statutory guidance for organisations which work with and support children and young people who have special educational needs or disabilities. Available at: <a href="https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf" ref="pagearea=cite-ref&targetsite=external&targetcat=link&targettype=uri">https://assets<wbr style="display:inline-block"></wbr>​.publishing<wbr style="display:inline-block"></wbr>​.service.gov.uk<wbr style="display:inline-block"></wbr>​/government/uploads/system<wbr style="display:inline-block"></wbr>​/uploads/attachment_data<wbr style="display:inline-block"></wbr>​/file/398815<wbr style="display:inline-block"></wbr>​/SEND_Code_of_Practice_January_2015<wbr style="display:inline-block"></wbr>​.pdf</a> [Accessed 05/11/2020]</div></p></li></ul></div></ul></div></div><div id="appendixesappgroup1"><h2 id="_appendixesappgroup1_">Appendices</h2><div id="niceng213er11.appa"><h3>Appendix A. Review protocol</h3><p id="niceng213er11.appa.et1"><a href="/books/NBK579709/bin/niceng213er11-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</a><span class="small"> (PDF, 195K)</span></p></div><div id="niceng213er11.appb"><h3>Appendix B. Literature search strategies</h3><div id="niceng213er11.appb.s1"><h4>Literature search strategies for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</h4></div><div id="niceng213er11.appb.s2"><h4>Databases: Medline; Medline EPub Ahead of Print; and Medline In-Process & Other Non-Indexed Citations</h4><p id="niceng213er11.appb.et1"><a href="/books/NBK579709/bin/niceng213er11-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (161K)</span></p></div><div id="niceng213er11.appb.s3"><h4>Databases: Embase; and Embase Classic</h4><p id="niceng213er11.appb.et2"><a href="/books/NBK579709/bin/niceng213er11-appb-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (170K)</span></p></div><div id="niceng213er11.appb.s4"><h4>Database: Health Management Information Consortium (HMIC)</h4><p id="niceng213er11.appb.et3"><a href="/books/NBK579709/bin/niceng213er11-appb-et3.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (161K)</span></p></div><div id="niceng213er11.appb.s5"><h4>Database: Social Policy and Practice</h4><p id="niceng213er11.appb.et4"><a href="/books/NBK579709/bin/niceng213er11-appb-et4.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (156K)</span></p></div><div id="niceng213er11.appb.s6"><h4>Database: PsycInfo</h4><p id="niceng213er11.appb.et5"><a href="/books/NBK579709/bin/niceng213er11-appb-et5.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (170K)</span></p></div><div id="niceng213er11.appb.s7"><h4>Database: Emcare</h4><p id="niceng213er11.appb.et6"><a href="/books/NBK579709/bin/niceng213er11-appb-et6.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (162K)</span></p></div><div id="niceng213er11.appb.s8"><h4>Databases: Cochrane Central Register of Controlled Trials (CCTR); and Cochrane Database of Systematic Reviews (CDSR)</h4><p id="niceng213er11.appb.et7"><a href="/books/NBK579709/bin/niceng213er11-appb-et7.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (172K)</span></p></div><div id="niceng213er11.appb.s9"><h4>Database: Database of Abstracts of Reviews of Effects (DARE)</h4><p id="niceng213er11.appb.et8"><a href="/books/NBK579709/bin/niceng213er11-appb-et8.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (154K)</span></p></div><div id="niceng213er11.appb.s10"><h4>Database: Applied Social Sciences Index & Abstracts (ASSIA)</h4><p id="niceng213er11.appb.et9"><a href="/books/NBK579709/bin/niceng213er11-appb-et9.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (152K)</span></p></div><div id="niceng213er11.appb.s11"><h4>Databases: Social Services Abstracts; Sociological Abstracts; and ERIC (Education Resources Information Centre)</h4><p id="niceng213er11.appb.et10"><a href="/books/NBK579709/bin/niceng213er11-appb-et10.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (140K)</span></p></div><div id="niceng213er11.appb.s12"><h4>Database: British Education Index</h4><p id="niceng213er11.appb.et11"><a href="/books/NBK579709/bin/niceng213er11-appb-et11.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (144K)</span></p></div><div id="niceng213er11.appb.s13"><h4>Database: CINAHL Plus (Cumulative Index to Nursing and Allied Health Literature)</h4><p id="niceng213er11.appb.et12"><a href="/books/NBK579709/bin/niceng213er11-appb-et12.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (142K)</span></p></div><div id="niceng213er11.appb.s14"><h4>Database: Social Sciences Citation Index (SSCI)</h4><p id="niceng213er11.appb.et13"><a href="/books/NBK579709/bin/niceng213er11-appb-et13.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (151K)</span></p></div><div id="niceng213er11.appb.s15"><h4>Database: Social Care Online</h4><p id="niceng213er11.appb.et14"><a href="/books/NBK579709/bin/niceng213er11-appb-et14.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (195K)</span></p></div></div><div id="niceng213er11.appc"><h3>Appendix C. Qualitative evidence study selection</h3><p id="niceng213er11.appc.et1"><a href="/books/NBK579709/bin/niceng213er11-appc-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Study selection for: What is the experience of disabled children and young people with severe complex needs and their families and carers of joint delivery of health, social care and education services?</a><span class="small"> (PDF, 182K)</span></p></div><div id="niceng213er11.appd"><h3>Appendix D. Qualitative evidence</h3><p id="niceng213er11.appd.et1"><a href="/books/NBK579709/bin/niceng213er11-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Evidence tables for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</a><span class="small"> (PDF, 995K)</span></p></div><div id="niceng213er11.appe"><h3>Appendix E. Forest plots</h3><div id="niceng213er11.appe.s1"><h4>Forest plots for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</h4><p>No meta-analysis was conducted for this review question and so there are no forest plots.</p></div></div><div id="niceng213er11.appf"><h3>Appendix F. GRADE CERQual tables</h3><p id="niceng213er11.appf.et1"><a href="/books/NBK579709/bin/niceng213er11-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">GRADE CERQual tables for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</a><span class="small"> (PDF, 685K)</span></p></div><div id="niceng213er11.appg"><h3>Appendix G. Economic evidence study selection</h3><div id="niceng213er11.appg.s1"><h4>Economic evidence study selection for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</h4><p>One global search was undertaken – please see <a href="/books/NBK579709/bin/niceng213er11_bm2.pdf">Supplement B</a> for details on study selection.</p></div></div><div id="niceng213er11.apph"><h3>Appendix H. Economic evidence tables</h3><div id="niceng213er11.apph.s1"><h4>Economic evidence tables for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng213er11.appi"><h3>Appendix I. Economic model</h3><div id="niceng213er11.appi.s1"><h4>Economic model for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng213er11.appj"><h3>Appendix J. Excluded studies</h3><div id="niceng213er11.appj.s1"><h4>Excluded studies for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</h4><div id="niceng213er11.appj.s1.1"><h5>1.1.1.11. Qualitative studies</h5><p id="niceng213er11.appj.tab1"><a href="/books/NBK579709/table/niceng213er11.appj.tab1/?report=objectonly" target="object" rid-ob="figobniceng213er11appjtab1" class="figpopup">Table 22. Excluded studies and reasons for their exclusion</a></p></div><div id="niceng213er11.appj.s1.2"><h5>1.1.1.12. Economic studies</h5><p>No economic evidence was identified for this review. See <a href="/books/NBK579709/bin/niceng213er11_bm2.pdf">Supplement B</a> for further information.</p></div></div></div><div id="niceng213er11.appk"><h3>Appendix K. Research recommendations – full details</h3><div id="niceng213er11.appk.s1"><h4>Research recommendations for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</h4><p>No research recommendations were made for this review question.</p></div></div><div id="niceng213er11.appl"><h3>Appendix L. Qualitative thematic maps</h3><p id="niceng213er11.appl.et1"><a href="/books/NBK579709/bin/niceng213er11-appl-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Qualitative thematic maps for review question: What are the barriers and facilitators perceived or experienced by users, providers and practitioners of joined-up care across health, social care, education and other services for disabled children and young people with severe complex needs?</a><span class="small"> (PDF, 1.2M)</span></p></div></div></div><div class="fm-sec"><div><p>Final</p></div><div><p>Evidence reviews</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 2022.</div><div class="small"><span class="label">Bookshelf ID: NBK579709</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/35471793" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">35471793</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng213er11tab1"><div id="niceng213er11.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/NBK579709/table/niceng213er11.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er11.tab1_lrgtbl__"><table><tbody><tr><th id="hd_b_niceng213er11.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population</th><td headers="hd_b_niceng213er11.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>Disabled children and young people from birth to 25 years with severe complex needs who require health, social care and education support.</div></li><li class="half_rhythm"><div>Families and carers of disabled children and young people from birth to 25 years with severe complex needs who require health, social care and education support.</div></li><li class="half_rhythm"><div>People who provide, or work in, health care, social care or educational services for disabled children and young people from birth to 25 years with severe complex needs who require health, social care and education support.</div></li></ul>
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</td></tr><tr><th id="hd_b_niceng213er11.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Phenomenon of Interest</th><td headers="hd_b_niceng213er11.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">The views and experiences of service users, service providers and practitioners, specifically on the barriers and facilitators relating to joined-up care between health, social care and education services for disabled children and young people with severe complex needs.
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<ul><li class="half_rhythm"><div>Service users: People using or eligible to use all three services; health, social care and education.</div></li><li class="half_rhythm"><div>Service providers: People providing one or more of the three services; health, social care and education.</div></li><li class="half_rhythm"><div>Practitioners: People working in one or more of the three services; health, social care and education</div></li></ul>
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Potential themes include:
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<ul><li class="half_rhythm"><div>Budgets (boundaries / combined)</div></li><li class="half_rhythm"><div>Thresholds and eligibility criteria including diagnosis</div></li><li class="half_rhythm"><div>Disjointed commissioning & provision, cultures</div></li><li class="half_rhythm"><div>Information governance/protection,</div></li><li class="half_rhythm"><div>IT systems/data management and technology</div></li><li class="half_rhythm"><div>Long term planning</div></li><li class="half_rhythm"><div>Education & staff training (joint training)</div></li><li class="half_rhythm"><div>Policy and legislation</div></li><li class="half_rhythm"><div>Location (co-location, separate locations)</div></li><li class="half_rhythm"><div>Transports</div></li><li class="half_rhythm"><div>Adjustments, facilities and communication</div></li><li class="half_rhythm"><div>Disruption to everyday life</div></li><li class="half_rhythm"><div>Keyworkers and facilitators</div></li><li class="half_rhythm"><div>Home-schooling</div></li><li class="half_rhythm"><div>Age related transitions (e.g. children to adult services, primary to secondary school)</div></li></ul></td></tr><tr><th id="hd_b_niceng213er11.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng213er11.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>All settings will be covered in which health, social care and education is provided for disabled children and young people from birth to 25 years with severe complex needs.</p>
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<p>Studies sought will be those published in the English language from the UK, from 2013 until the date the searches are run.</p>
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</td></tr></tbody></table></div></div></article><article data-type="table-wrap" id="figobniceng213er11tab2"><div id="niceng213er11.tab2" class="table"><h3><span class="label">Table 2</span><span class="title">Summary of included studies</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK579709/table/niceng213er11.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er11.tab2_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Study</th><th id="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><th id="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Description of child/young person</th><th id="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Methods</th><th id="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Themes applied after thematic synthesis</th></tr></thead><tbody><tr><td headers="hd_h_niceng213er11.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="#niceng213er11.s1.ref1" rid="niceng213er11.s1.ref1">Adams 2017</a>
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</p>
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<p>Education, Health and Social Care Services</p>
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</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Service users:</p>
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<p>N=722</p>
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<p>Young people (aged 16 years and above) identified from the National Pupil Database and Individualised Learner Record as having an EHC plan in place in 2015</p>
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<p>N=12,921</p>
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<p>Parents/carers of children and young people identified from the National Pupil Database and Individualised Learner Record as having an EHC plan in place in 2015</p>
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</td><td headers="hd_h_niceng213er11.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>Needs or conditions:</b>
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</p>
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<p>Autistic spectrum disorder, speech, language and communication needs, social, emotional & mental health, moderate, severe or profound and multiple learning difficulty, physical disability, difficulty, hearing impairment, visual impairment, multi-sensory impairment</p>
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<p>
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<b>Age Range (Mean):</b>
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</p>
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<p>0 to 25 years (NR)</p>
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</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>
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<b>Setting:</b>
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</p>
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<p>NR</p>
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<p>
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<b>Data collection:</b>
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</p>
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<p>Survey with free text questions</p>
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</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<ul><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li></ul>
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</td></tr><tr><td headers="hd_h_niceng213er11.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="#niceng213er11.s1.ref2" rid="niceng213er11.s1.ref2">Adams 2018</a>
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</p>
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<p>Education, Health and Social Care Services</p>
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</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>Service users:</p>
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|
<p>N=25</p>
|
|
<p>Young people (aged 16 years and above) or parents/carers of children and young people identified from the National Pupil Database and Individualised Learner Record as having an EHC plan in place in 2015*</p>
|
|
<p>*Follow-up from <a class="bibr" href="#niceng213er11.s1.ref1" rid="niceng213er11.s1.ref1">Adams 2017</a></p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR (face-to-face)</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref3" rid="niceng213er11.s1.ref3">Boesley 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=16</p>
|
|
<p>SENCOs based in England and had undertaken an application for an EHC plan, or transferred a statement of SEN into an EHC plan.</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Primary and secondary schools across England (telephone)</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref4" rid="niceng213er11.s1.ref4">Boyce 2015</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=26</p>
|
|
<p>Parents of children who are certified as severely sight impaired or sight impaired</p>
|
|
<p>Service providers:</p>
|
|
<p>N=35</p>
|
|
<p>Health, education and social care professionals involved in certifying and supporting infants and children with vision impairment</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Severely sight impaired or sight impaired (including infants and children with complex needs)</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Hospital</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref5" rid="niceng213er11.s1.ref5">Brooks 2013</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=2</p>
|
|
<p>Children with complex needs (aged 6 and 10 years)</p>
|
|
<p>N=7</p>
|
|
<p>Parents with children who have continuing complex care needs</p>
|
|
<p>Service providers:</p>
|
|
<p>N=18</p>
|
|
<p>Stakeholders and professionals who have significant input into children’s and families’ care within the study locality (community paediatricians, nurses, therapists and teachers)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Cystic fibrosis, spina bifida, microcephaly, biliary atresia, tuberous sclerosis</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>1 to 16 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Service users: Family home, parents place of work</p>
|
|
<p>Service providers: Professionals place of work, telephone</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews and focus groups</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref6" rid="niceng213er11.s1.ref6">Children’s Commissioner for Wales 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=99</p>
|
|
<p>Young people (aged 14 to 26) with learning disabilities</p>
|
|
<p>N=187</p>
|
|
<p>Parents of children and young people with learning disabilities</p>
|
|
<p>Service providers:</p>
|
|
<p>N=43</p>
|
|
<p>Professionals from education, health, social care and voluntary services who work with young people with learning disabilities</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Learning disabilities</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>14 to 26 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Focus groups (young people and service providers) and online questionnaires (parents)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Transition</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref7" rid="niceng213er11.s1.ref7">Cohen 2017</a>
|
|
</p>
|
|
<p>Education and Health Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=1</p>
|
|
<p>Young person (aged 16 years) with a confirmed genetic diagnosis of 22q11DS</p>
|
|
<p>N=33</p>
|
|
<p>Parents/carers of individuals of any age with a confirmed genetic diagnosis of 22q11DS</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>22q11DS</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>URL link via websites and social media</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Survey</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Information sharing</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref8" rid="niceng213er11.s1.ref8">Council for Disabled Children 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=6</p>
|
|
<p>Parents of adopted children with disabilities that became apparent during or after adoption</p>
|
|
<p>Service providers:</p>
|
|
<p>N=13</p>
|
|
<p>Professionals with experience of supporting adopted children with disabilities that became apparent during or after adoption</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>ADHD, attachment difficulties/diso rder, ASD, complex health needs, developmental delay or trauma, dyspraxia, FASD/FAS, genetic condition, hearing loss, learning difficulties, sensory processing issues</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Primarily telephone</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref9" rid="niceng213er11.s1.ref9">Dillenburger 2016</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=14</p>
|
|
<p>Caregivers and parents of individuals with ASD</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Learning disabilities, attention deficit hyperactivity disorder, dyslexia, dyspraxia, sleep disorders, anxiety, tourette’s syndrome, asthma, eczema. (N=12 had one or more co-occurring conditions)</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>3 to 27 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Participants home or office (face-to-face or self-completion) whichever was preferred</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi structured interviews, questionnaire with free text questions and focus groups</p>
|
|
<p>
|
|
<b>Analysis:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref10" rid="niceng213er11.s1.ref10">Fox 2017</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=15</p>
|
|
<p>Parents to a child under 16 years of age who has a diagnosis of autism and who identified as a member of the Bristol Somali migrant community</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Autism</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>4 to 13 years (7 years)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Community centre or participants’ own homes (according to preference)</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref11" rid="niceng213er11.s1.ref11">Griffith 2013</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=10</p>
|
|
<p>Parents</p>
|
|
<p>Service providers:</p>
|
|
<p>N=8</p>
|
|
<p>Assessment service providers (social and communication team, and child and adolescent mental health services)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Autism, Asperger syndrome, and no diagnosis</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>2 to 12 years (6.6 years)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Local clinic (face-to-face)</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Working across multiple services</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref12" rid="niceng213er11.s1.ref12">Hurt 2019</a>
|
|
</p>
|
|
<p>Education and Health Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=7</p>
|
|
<p>Parent of primary school children with ASD</p>
|
|
<p>Service providers:</p>
|
|
<p>N=16</p>
|
|
<p>Health and education professionals working within an NHS multidisciplinary neurodevelopmental team and a mainstream primary school</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>ASD</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>One health board and one primary school in South Wales</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Focus groups</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Working across multiple services</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref13" rid="niceng213er11.s1.ref13">Hutton 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=9</p>
|
|
<p>Parents/carers of disabled children (aged 18 years or younger) who accessed at least two paediatric rehabilitation therapy services (e.g. physiotherapy, occupational therapy, and speech and language therapy)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>2 to 16 years (8.7 years)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>One region in the South of England (face-to-face)</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Focus groups and interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Funding and resources</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref14" rid="niceng213er11.s1.ref14">Kaehne 2013</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=3</p>
|
|
<p>Parent representatives involved in planning new co-located services for children with significant disabilities</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Significant disabilities.</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>0 to 19 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Communication and support</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref15" rid="niceng213er11.s1.ref15">Karim 2014</a>
|
|
</p>
|
|
<p>Education and Health Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=21</p>
|
|
<p>Professionals from the NHS and two local education authorities working with children with ASD</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>ASD</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Funding and resources</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref16" rid="niceng213er11.s1.ref16">Kiernan 2019</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=10</p>
|
|
<p>Mothers of children whose behaviours had been described as challenging, based on parental disclosure of their child/children’s diagnoses of intellectual disability, behavioural needs and special educational needs</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>(moderate, severe or profound and multiple) learning difficulties, ASD, cerebral palsy, ADHD, ODD</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>7 to 18 years (13.6 years)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Preferred location</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Organisation of services</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref17" rid="niceng213er11.s1.ref17">Kirk 2014</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=16</p>
|
|
<p>Young people (aged over 16 years) not at an end-of life stage, from one children’s hospice</p>
|
|
<p>N=16</p>
|
|
<p>Parents of young people not at an end-of life stage, from one children’s hospice</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Cerebral palsy, pervasive developmental disorder, duchenne muscular dystrophy, spinal muscular atrophy, down’s syndrome, congenital condition, metabolic condition, other nervous system conditions</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>16 to 31 years* (20.5 years)</p>
|
|
<p>*The percentage of participants aged 28-31 years was 12.5% for YP and 8.3% for parents</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Preferred location</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interview</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Organisation of services</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref18" rid="niceng213er11.s1.ref18">McCartney 2017</a>
|
|
</p>
|
|
<p>Education and Health Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=7</p>
|
|
<p>Speech and language therapists involved in transition between child and adult services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Workplaces and universities in one Scottish health board</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Transition</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Communication and support</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref19" rid="niceng213er11.s1.ref19">McConkey 2013</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=14</p>
|
|
<p>Family members of children currently receiving services from Action for Children, or had received services in the past 2 years</p>
|
|
<p>Service providers:</p>
|
|
<p>N=34</p>
|
|
<p>Key workers and Referrers of children currently receiving services from Action for Children, or had received services in the past 2 years</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Developmental disabilities and severely challenging behaviours</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>Up to 19 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>In a private room in the short break service/family homes (face-to-face), and telephone</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Working across multiple services</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref20" rid="niceng213er11.s1.ref20">McKean 2017</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=33</p>
|
|
<p>Key professionals working with children with speech, language and communication needs</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Speech, language and communication needs</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>One local authority and NHS trust in England</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>Communication and support</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref21" rid="niceng213er11.s1.ref21">Molteni 2013</a>
|
|
</p>
|
|
<p>Education and Health Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=22</p>
|
|
<p>Teams of professionals involved in implementing the Social Communication, Emotional Regulation, Transactional Support (SCERTS) model</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Severe learning difficulties</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Focus groups, semi-structured interviews and one open-ended question on a questionnaire</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li><li class="half_rhythm"><div>Information sharing</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref22" rid="niceng213er11.s1.ref22">National Autistic Society 2015</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=231</p>
|
|
<p>Children and young people (aged under 25 years) with autism</p>
|
|
<p>N=1,431</p>
|
|
<p>Parent or carer of children or young people with autism</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Autism</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Survey including open-ended questions</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Communication and support</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref23" rid="niceng213er11.s1.ref23">Palikara 2019</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=374</p>
|
|
<p>Professionals working in special education</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Survey distributed through research network</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured survey</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref24" rid="niceng213er11.s1.ref24">RIP STARS 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=15</p>
|
|
<p>Children and young people with disabilities</p>
|
|
<p>N=10</p>
|
|
<p>Parent/carers of children and young people with disabilities</p>
|
|
<p>Service providers:</p>
|
|
<p>N=17</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>13 to 25</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interviews and group discussions</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li><li class="half_rhythm"><div>Transition</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref25" rid="niceng213er11.s1.ref25">Rodriguez 2014</a>
|
|
</p>
|
|
<p>Unclear what services were involved</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=20</p>
|
|
<p>Parents of children with life limiting conditions</p>
|
|
<p>Service providers:</p>
|
|
<p>N=21</p>
|
|
<p>Professionals working in paediatric care</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Cancer, cerebral palsy, muscular dystrophy, congenital disorder, neurological disorder, genetic disorder</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>One UK county, including both urban and rural areas</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews (service users) and focus groups (service providers)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref26" rid="niceng213er11.s1.ref26">Sales 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=4</p>
|
|
<p>Children and young people (aged 10 to 17)</p>
|
|
<p>N=7</p>
|
|
<p>Parents</p>
|
|
<p>Service providers:</p>
|
|
<p>N=9</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Work or home (face-to-face)</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref27" rid="niceng213er11.s1.ref27">Skipp 2016</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=15</p>
|
|
<p>Young people with experience of the EHC process</p>
|
|
<p>N=77</p>
|
|
<p>Parents with experience of the EHC process</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Behavioural/so cial/emotional, cognition and learning, communication and interaction, physical or sensory</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Telephone interviews. Location for focus groups NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews and focus groups</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Diagnosis and identification of needs first</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li><li class="half_rhythm"><div>Organisation of services</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref28" rid="niceng213er11.s1.ref28">Smith 2014</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=31</p>
|
|
<p>Families participating in the new EHC planning pathway that received an EHC plan</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Autism, learning disability, physical disability, learning and physical disabilities, autism and learning disability, autism and learning and physical disabilities</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>0 to 25 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Family home (face-to-face) and telephone</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>An imbalanced distribution in the amount of support provided to children/young people</div></li><li class="half_rhythm"><div>Joined-up care requires a substantial amount of time, organisation and commitment</div></li><li class="half_rhythm"><div>Long waiting times for support</div></li><li class="half_rhythm"><div>Difficulty in obtaining an EHC plan (or replacing a statement of SEN with an EHC plan)</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Communication and support</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref29" rid="niceng213er11.s1.ref29">Spivack 2014</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=NR</p>
|
|
<p>Lead professionals involved in collaborative working with social care.</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR (face-to-face) and telephone</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Funding and resources</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref30" rid="niceng213er11.s1.ref30">Taylor 2014</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=61</p>
|
|
<p>Professionals with experience of responding to at least two child protection cases involving a disabled child.</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Telephone</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Professional and staff knowledge and training</div></li><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref31" rid="niceng213er11.s1.ref31">Thom 2014</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service providers:</p>
|
|
<p>N=26</p>
|
|
<p>Professionals responsible for engaging with post-16 providers and young people, and/or with experience of post-16 transitions for children and young people with SEND.</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>SEND</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Information sharing</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Relationships between service providers</div></li><li class="half_rhythm"><div>Introduction of EHC plans</div></li><li class="half_rhythm"><div>Attitudes and social stigma about service provisions</div></li><li class="half_rhythm"><div>Organisation of services</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref32" rid="niceng213er11.s1.ref32">Thom 2015</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=9</p>
|
|
<p>Children and young people from pathfinder families who had just completed EHC plans</p>
|
|
<p>N=83</p>
|
|
<p>Parents/carers from pathfinder families who had just completed EHC plans</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>Autism, learning disabilities, physical disabilities</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>0 to 25 (NR)</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Family home or telephone</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Interviews</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Importance of key worker/lead professional</div></li><li class="half_rhythm"><div>Service users’ involvement and relationships with service providers</div></li><li class="half_rhythm"><div>Communication and support</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er11.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er11.s1.ref33" rid="niceng213er11.s1.ref33">Young 2018</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>Service users:</p>
|
|
<p>N=2</p>
|
|
<p>Young people (aged 19 and 23 years) registered with a pilot short-break service for young adults aged 18–24 years with life-limiting conditions</p>
|
|
<p>N=4</p>
|
|
<p>Mothers of young adults registered with the pilot service</p>
|
|
<p>Service providers:</p>
|
|
<p>N=15</p>
|
|
<p>Health or Social Care staff working the pilot service</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>NR</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Pilot short-break service for young adults aged 18–24 years with life-limiting conditions</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews or focus groups</p>
|
|
</td><td headers="hd_h_niceng213er11.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Organisation of services</div></li><li class="half_rhythm"><div>Funding and resources</div></li><li class="half_rhythm"><div>Relationships between service providers</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">ADHD: attention deficit hyperactivity disorder; ASD: autistic spectrum disorder; EHC: education health care; FAS: fetal alcohol syndrome; FASD: fetal alcohol spectrum disorders; NR: not reported; ODD: oppositional defiance disorder; SCERTS: social communication, emotional regulation, transactional support; SEN: special educational needs; SENCO: special educational needs coordinator; SEND: special educational needs and disability; YP: young people</p></div></dd></dl></dl></div></div></div></article><article data-type="fig" id="figobniceng213er11fig1"><div id="niceng213er11.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=579709_niceng213er11f1.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/NBK579709/bin/niceng213er11f1.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="figobniceng213er11appjtab1"><div id="niceng213er11.appj.tab1" class="table"><h3><span class="label">Table 22</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/NBK579709/table/niceng213er11.appj.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er11.appj.tab1_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Abbott, David, Carpenter, John, “The things that are inside of you are horrible”: Children and young men with Duchenne muscular dystrophy talk about the impact of living with a long-term condition, Child Care in Practice, 21, 67–77, 2015
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined-up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Abbott, David, Townsley, Ruth, Watson, Debby, Multi-agency working in services for disabled children: what impact does it have on professionals?, Health & social care in the community, 13, 155–63, 2005 [<a href="https://pubmed.ncbi.nlm.nih.gov/15717917" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15717917</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Publication date: Pre 2013</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Abbott, Mandy, Bernard, Paul, Forge, Jenny, Communicating a diagnosis of Autism Spectrum Disorder - a qualitative study of parents’ experiences, Clinical Child Psychology & Psychiatry, 18, 370–382, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/22904114" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22904114</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Adams, Sherri, Cohen, Eyal, Mahant, Sanjay, Friedman, Jeremy N., Macculloch, Radha, Nicholas, David B., Exploring the usefulness of comprehensive care plans for children with medical complexity (CMC): a qualitative study, BMC pediatrics, 13, 10, 2013 [<a href="/pmc/articles/PMC3570291/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC3570291</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/23331710" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23331710</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Canada</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Adams, Sherri, Nicholas, David, Mahant, Sanjay, Weiser, Natalie, Kanani, Ronik, Boydell, Katherine, Cohen, Eyal, Adams, Adams Antonelli Attride-Stirling Batalden Bensing Berry Blumberg Cohen Cohen Cohen Coleman Committee Corbin Dewan Feudtner Gavin Guest Izumi Kuo Kuo Lind Lion Richards Wagner Wagner Wirth Yurcek, Care maps and care plans for children with medical complexity, Child: Care, Health and Development, 45, 104–110, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30462842" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30462842</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Canada.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Almqvist, Anna-Lena, Lassinantti, Kitty, Social Work Practices for Young People with Complex Needs: An Integrative Review: C & A C & A, Child & Adolescent Social Work Journal, 35, 207–219, 2018
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International Integrative review. Themes: No relevant qualitative data. References checked for relevant UK papers from 2013 for inclusion.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Alonso Soriano, Claudia, Hill, Elisabeth L., Crane, Laura, Surveying parental experiences of receiving a diagnosis of developmental coordination disorder (DCD), Research in Developmental Disabilities, 43, 11–20, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/26151439" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26151439</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design: Survey with quantitative results only.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Alves, Joao Manuel Nunes de Oliveira, Amendoeira, Jose Joaquim Penedos, Charepe, Zaida Borges, The parental care partnership in the view of parents of children with special health needs, A parceria de cuidados pelo olhar dos pais de criancas com necessidades especiais de saude., 38, e2016–70, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/29791536" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29791536</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Anderson, Kristy A., Sosnowy, Collette, Kuo, Alice A., Shattuck, Paul T., Transition of Individuals With Autism to Adulthood: A Review of Qualitative Studies, Pediatrics, 141, S318–S327, 2018 [<a href="https://pubmed.ncbi.nlm.nih.gov/29610413" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29610413</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design: Scoping review</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Anderson, Lori S., Mothers of children with special health care needs: documenting the experience of their children’s care in the school setting, The Journal of school nursing : the official publication of the National Association of School Nurses, 25, 342–51, 2009 [<a href="/pmc/articles/PMC2764271/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC2764271</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/19383837" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 19383837</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country and publication date: US, pre 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Arcuri, G. G., McMullan, A. E., Murray, A. E., Silver, L. K., Bergthorson, M., Dahan-Oliel, N., Coutinho, F., Perceptions of family-centred services in a paediatric rehabilitation programme: strengths and complexities from multiple stakeholders, Child: Care, Health & Development, 42, 195–202, 2016 [<a href="https://pubmed.ncbi.nlm.nih.gov/26647743" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26647743</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Canada.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Barnert, Elizabeth S., Coller, Ryan J., Nelson, Bergen B., Thompson, Lindsey R., Chan, Vincent, Padilla, Cesar, Klitzner, Thomas S., Szilagyi, Moira, Chung, Paul J., Experts’ Perspectives Toward a Population Health Approach for Children With Medical Complexity, Academic pediatrics, 17, 672–677, 2017 [<a href="/pmc/articles/PMC5545175/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5545175</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/28246024" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28246024</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data for extraction.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Beresford, Bryony, et al, Transition to adult services and adulthood for young people with autistic spectrum conditions: final report, 210p., 2013
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Population not relevant; majority of participants were diagnosed with Asperger’s syndrome (62%) and high functioning autism (11%) thus classified as ineligible for adult social care services. Other diagnoses included Autism spectrum disorder (5%) and Autism (22%).</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Beresford, Bryony, et al, Transition to adult services and adulthood for young people with autistic spectrum conditions: summary, 4p., 2013
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design: Summary document</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Boshoff, Kobie, Gibbs, Deanna, Phillips, Rebecca L., Wiles, Louise, Porter, Lisa, A meta-synthesis of how parents of children with autism describe their experience of advocating for their children during the process of diagnosis, Health & Social Care in the Community, 27, e143–e157, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30548710" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30548710</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International qualitative meta-synthesis. Themes: No relevant qualitative data. References checked for relevant UK papers from 2013 for inclusion.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Boyden, Paul, Muniz, Michelle, Laxton-Kane, Martha, Listening to the Views of Children with Learning Disabilities: An Evaluation of a Learning Disability CAMHS Service, Journal of Intellectual Disabilities, 17, 51–63, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/23257112" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23257112</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined-up care/services. Study reports on one learning disability-child and adolescent mental health service only.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Bradshaw, Paul, Hall, Julia, The impact of disability on the lives of young children: analysis of data from the Growing Up in Scotland study, 2013
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study type: Quantitative data only</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Bray, L., Shaw, N. J., Snodin, J., Living and managing with the long-term implications of neonatal chronic lung disease: The experiences and perspectives of children and their parents, Heart and Lung: Journal of Acute and Critical Care, 44, 512–516, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/26383100" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26383100</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views and experiences of joined-up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Bristow, Sally, Jackson, Debra, Shields, Linda, Usher, Kim, The rural mother’s experience of caring for a child with a chronic health condition: An integrative review, Journal of clinical nursing, 27, 2558–2568, 2018 [<a href="https://pubmed.ncbi.nlm.nih.gov/29575208" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29575208</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">US and Australia Integrative review. No UK studies included.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Bromley, Jo, Hare, Dougal Julian, Davison, Kerry, Emerson, Eric, Mothers supporting children with autistic spectrum disorders: social support, mental health status and satisfaction with services, Autism : the international journal of research and practice, 8, 409–23, 2004 [<a href="https://pubmed.ncbi.nlm.nih.gov/15556959" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 15556959</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design and publication date: Interview with quantitative data only, pre 2013</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Campos, S. R., Soria, E. L., Liz, A. A., PRINCEP program: clinical program for specialized and integrated care of paediatric patients with complex chronic conditions, International Journal of Integrated Care, 16, 2016
|
|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Chapman, M., Lacey, H., Jervis, N., Improving services for people with learning disabilities and dementia: Findings from a service evaluation exploring the perspectives of health and social care professionals, BRITISH JOURNAL OF LEARNING DISABILITIES, 46, 33–44, 2018
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Learning disabilities and dementia. Age unclear; study refers to a population aged 25 years plus when dementia screening, takes place.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Collins, Michelle, et al, A break from caring for a disabled child: parent perceptions of the uses and benefits of short break provision in England, BRITISH JOURNAL OF SOCIAL WORK, 44, 1180–1196, 2014
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Commission for Social Care Inspection Commission for Healthcare, Audit, Inspection Mental Health Act, Commission, Commissioning services and support for people with learning disabilities and complex needs: National report of joint review, 2009
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design: National report. No qualitative data. Published pre 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Crawford, T., Simonoff, E., Parental views about services for children attending schools for the emotionally and behaviourally disturbed (EBD): a qualitative analysis, Child: Care, Health & Development, 29, 481–91, 2003 [<a href="https://pubmed.ncbi.nlm.nih.gov/14616906" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 14616906</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Does not meet criteria; emotionally and behaviourally disturbed children without comorbidities. Published pre 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Danvers, Lesley, Freshwater, Dawn, Cheater, Francine, Wilson, Andrew, Providing a seamless service for children with life-limiting illness: experiences and recommendations of professional staff at the Diana Princess of Wales Children’s Community Service, Journal of clinical nursing, 12, 351–9, 2003 [<a href="https://pubmed.ncbi.nlm.nih.gov/12709109" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12709109</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Publication date: study published pre 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Davies, Karen, Tensions in commissioning : services for children’s speech, language and communication needs in one English region, Journal of Health Services, Research and Policy, 17, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/22572715" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22572715</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design and themes: Narrative review of case studies. No relevant qualitative data for extraction.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Dockrell, Julie E., Lindsay, Geoff, Letchford, Becky, Mackie, Clare, Educational provision for children with specific speech and language difficulties: perspectives of speech and language therapy service managers, International journal of language & communication disorders, 41, 423–40, 2006 [<a href="https://pubmed.ncbi.nlm.nih.gov/16815810" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16815810</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Does not meet criteria; children with specific speech and language difficulties without severity/complexity or comorbidities. Published pre 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Duff, M., Giles, B., Making the best of things: Raising a child with complex health needs that include respiratory technology dependence, Chest, 144, 2013
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Publication type: Abstract</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Duff, M., Giles, B., A constricted life: Growing up with complex health needs that include respiratory technology dependence, Chest, 144, 2013
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Publication type: Abstract</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Elder, Jennifer Harrison, Brasher, Susan, Alexander, Beverly, Identifying the Barriers to Early Diagnosis and Treatment in Underserved Individuals with Autism Spectrum Disorders (ASD) and Their Families: A Qualitative Study, Issues in mental health nursing, 37, 412–20, 2016 [<a href="https://pubmed.ncbi.nlm.nih.gov/27070190" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27070190</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Feinberg, E., Silverstein, M., Ferreira-Cesar, Z., Integrating mental health services for mothers of children with autism, Psychiatric Services, 64, 930, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/24026841" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24026841</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design: Commentary/report</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Fellin, Melissa, Desmarais, Chantal, Lindsay, Sally, An examination of clinicians’ experiences of collaborative culturally competent service delivery to immigrant families raising a child with a physical disability, Disability and rehabilitation, 37, 1961–9, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/25536451" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25536451</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Canada.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Flynn, A. P., Carter, B., Bray, L., Donne, A. J., Parents’ experiences and views of caring for a child with a tracheostomy: A literature review, International Journal of Pediatric Otorhinolaryngology, 77, 1630–1634, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/23953483" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23953483</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International literature review. Themes: No relevant qualitative data for extraction. Included list checked for relevant UK studies from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Fortuna, Ron, The social and emotional functioning of students with an autistic spectrum disorder during the transition between primary and secondary schools, Support for Learning, 29, 177–191, 2014
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to views or experiences of joined-up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Fraser, Lorna, et al, Children in Scotland requiring palliative care: identifying numbers and needs (The ChiSP Study), 59, 2015
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Systematic Review Themes: No relevant qualitative data for extraction. Included studies list checked for relevant UK papers from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
French, B., Sayal, K., Daley, D., Barriers and facilitators to understanding of ADHD in primary care: a mixed-method systematic review, European Child & Adolescent Psychiatry, 28, 1037–1064, 2019 [<a href="/pmc/articles/PMC6675769/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6675769</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30552584" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30552584</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International Systematic review. Themes: No relevant qualitative data for extraction. Included list checked for relevant UK papers from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Gaintza, Z., Ozerinjauregi, N., Arostegui, I., Educational inclusion of students with rare diseases: Schooling students with spina bifida, BRITISH JOURNAL OF LEARNING DISABILITIES, 46, 250–257, 2018
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No relevant qualitative data on the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Gallagher, A. L., Murphy, C. A., Conway, P. F., Perry, A., Engaging multiple stakeholders to improve speech and language therapy services in schools: an appreciative inquiry-based study, BMC Health Services Research, 19, 226, 2019 [<a href="/pmc/articles/PMC6466713/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6466713</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30987610" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30987610</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Ireland.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Gallagher, Aoife L., Murphy, Carol-Anne, Conway, Paul, Perry, Alison, Consequential differences in perspectives and practices concerning children with developmental language disorders: an integrative review, International journal of language & communication disorders, 54, 529–552, 2019 [<a href="/pmc/articles/PMC6767586/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6767586</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30945410" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30945410</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International integrative review. Themes: No relevant qualitative data for extraction. Included list checked for relevant UK papers from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Gaona, Carolina, Palikara, Olympia, Castro, Susana, ‘I’m ready for a new chapter’: The voices of young people with autism spectrum disorder in transition to post-16 education and employment, British Educational Research Journal, 45, 340–355, 2019
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the view and experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Gauthier-Boudreault, C., Gallagher, F., Couture, M., How to plan transition to adulthood of youth with profound intellectual disability: Professionals’ opinions, Journal of Intellectual Disability Research, 63, 818, 2019
|
|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Gellasch, Patricia, Developmental Screening in the Primary Care Setting: A Qualitative Integrative Review for Nurses, Journal of Pediatric Nursing, 31, 159–171, 2016 [<a href="https://pubmed.ncbi.nlm.nih.gov/26525281" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26525281</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International integrative review. Population: Children with developmental delays. Included studies list checked for relevant UK studies from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Geuze, Liesbeth, Goossensen, Anne, Parents caring for children with normal life span threatening disabilities: a narrative review of literature, Scandinavian Journal of Caring Sciences, 33, 279–297, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30575077" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30575077</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International narrative review. Themes: No relevant qualitative data for extraction. Included list checked for relevant UK studies from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hall, C. L., Newell, K., Taylor, J., Sayal, K., Hollis, C., Services for young people with attention deficit/hyperactivity disorder transitioning from child to adult mental health services: A national survey of mental health trusts in England, Journal of Psychopharmacology, 29, 39–42, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/25237121" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25237121</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design: Survey with quantitative data only.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hebert, Michele L. J., Kehayia, Eva, Prelock, Patricia, Wood-Dauphinee, Sharon, Snider, Laurie, Does occupational therapy play a role for communication in children with autism spectrum disorders?, International journal of speech-language pathology, 16, 594–602, 2014 [<a href="https://pubmed.ncbi.nlm.nih.gov/24460071" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24460071</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Canada and US.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Heer, K., Rose, J., Larkin, M., The Challenges of Providing Culturally Competent Care Within a Disability Focused Team: A Phenomenological Exploration of Staff Experiences, Journal of Transcultural Nursing, 27, 109–116, 2016 [<a href="https://pubmed.ncbi.nlm.nih.gov/24857931" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 24857931</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Heer, Kujit, Larkin, Michael, Rose, John, The experiences of British South Asian carers caring for a child with developmental disabilities in the UK, Tizard Learning Disability Review, 20, 228–238, 2015
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hillis, Rowan, Brenner, Maria, Larkin, Philip J., Cawley, Des, Connolly, Michael, The Role of Care Coordinator for Children with Complex Care Needs: A Systematic Review, International journal of integrated care, 16, 12, 2016 [<a href="/pmc/articles/PMC5015533/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5015533</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27616967" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27616967</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International Systematic Review. Themes: No quantitative data relevant to the views or experiences of joined up care/services. Included list checked for relevant UK studies from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hirano, Kara A., Rowe, Dawn, Lindstrom, Lauren, Chan, Paula, Systemic Barriers to Family Involvement in Transition Planning for Youth with Disabilities: A Qualitative Metasynthesis, Journal of Child and Family Studies, 27, 3440–3456, 2018
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|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International meta-synthesis. Included studies checked for relevant UK studies from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Hiremath, Girish, Kodroff, Ellyn, Strobel, Mary J., Scott, Melissa, Book, Wendy, Reidy, Cathy, Kyle, Shay, Mack, Denise, Sable, Kathleen, Abonia, Pablo, Spergel, Jonathan, Gupta, Sandeep K., Furuta, T. Glenn, Rothenberg, Marc E., Dellon, Evan S., Individuals affected by eosinophilic gastrointestinal disorders have complex unmet needs and frequently experience unique barriers to care, Clinics and research in hepatology and gastroenterology, 42, 483–493, 2018 [<a href="/pmc/articles/PMC6167209/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6167209</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29615329" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29615329</span></a>]
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|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study design: Survey with quantitative data only.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Hopper, Amy, Dokken, Deborah, Ahmann, Elizabeth, Transitioning from pediatric to adult health care: the experience of patients and families, Pediatric nursing, 40, 249–52, 2014 [<a href="https://pubmed.ncbi.nlm.nih.gov/25929117" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25929117</span></a>]
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|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design: Case study</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Hughes, Jane, Davies, Sue, Chester, Helen, Clarkson, Paul, Stewart, Karen, Challis, David, Learning disability services: user views on transition planning, Tizard Learning Disability Review, 23, 150–158, 2018
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|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Indirect - only 1/3 aged under 25 years</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Hurrell, C., Batchelor, M., Maguire, S., Designing the optimal model for transition from child to adult services for young people with disabilities and/or developmental difficulties, Archives of Disease in Childhood, 104, A196, 2019
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|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Hutchings, Judy, Williams, Margiad Elen, Joined-up thinking, joined-up services, exploring coalface challenges for making services work for families with complex needs, Journal of Children’s Services, 9, 31–41, 2014
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design: No qualitative data presented. Authors opinion and experience of services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
In, Control, Report on the use of the Personal Outcomes Evaluation Tool (POET) for children with education health and care plans, 82, 2016
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design: Survey reporting quantitative data only.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Jacobs, Paula, MacMahon, Kenneth, Quayle, Ethel, Transition from school to adult services for young people with severe or profound intellectual disability: a systematic review utilizing framework synthesis, Journal of Applied Research in Intellectual Disabilities, 31, 962–982, 2018 [<a href="https://pubmed.ncbi.nlm.nih.gov/29932264" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29932264</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">International systematic review. Themes: No relevant qualitative data for extraction. Included list checked for relevant UK studies from 2013.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Kerin, Lorna, McNicholas, Fiona, Lawlor, Aine, Hearing the lived experience of young women with a rare genetic disorder 22q11.2DS regarding integrated care, International Journal of Integrated Care (IJIC), 17, 1–2, 2017
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|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
King, Gillian A., Esses, Victoria M., Solomon, Nassisse, Akamatsu, Albright Ali Bailey Barnes Beresford Blacher Blair Blakemore Bronfenbrenner Brookins Bruce Chamba Cho Clarke Conger Crowley Darling Dilworth-Anderson Dilworth-Anderson Eifert Esses Esses Fiene Fong Forsyth Franck Gallegos Gallimore Gannotti Groce Guendelman Harris Harris Hek Hernandez Ho Huer Ingstad James Jegatheesan Katbamna King King King King King King King King King King Kinzie Kummerer Lai Ledere Lerner Ma Martin Mayer McDonald McNaughton McWilliam Michelson Missiuna Moore Neufeld Newacheck Newacheck Newacheck Omidvar Overton Parette Park Povlsen Priestley Raina Rhoades Roberts Roberts Rogers-Dulan Rosenbaum Roush Rutter Schuman Shirk Silver Skrinda Sloper Sloper Smith Steven Stewart Su Sumsion Thorp Wampold Weisz Welterlin Wright Yu, Grigorenko, Elena L., Immigrant and refugee families raising children with disabling conditions: A review of the international literature on service access, service utilization, and service care experiences, U.S. immigration and education: Cultural and policy issues across the lifespan., 179–206, 2013
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Publication type: Book chapter</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Kirk, Susan, Perceptions of effective self-care support for children and young people with long-term conditions, Journal of Clinical Nursing, 21, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/22672459" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22672459</span></a>]
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|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Participants with long-term conditions and no mention of severity or complexity.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
Kruijsen-Terpstra, A. J., Ketelaar, M., Boeije, H., Jongmans, M. J., Gorter, J. W., Verheijden, J., Lindeman, E., Verschuren, O., Parents’ experiences with physical and occupational therapy for their young child with cerebral palsy: a mixed studies review, Child: Care, Health & Development, 40, 787–96, 2014 [<a href="https://pubmed.ncbi.nlm.nih.gov/23937711" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 23937711</span></a>]
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|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, all pre 2013</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Law, M., Hanna, S., King, G., Hurley, P., King, S., Kertoy, M., Rosenbaum, P., Factors affecting family-centred service delivery for children with disabilities, Child: care, health and development, 29, 357–66, 2003 [<a href="https://pubmed.ncbi.nlm.nih.gov/12904243" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 12904243</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design: Survey with quantitative data only</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Lenehan, Christine, Geraghty, Mark, Good intentions, good enough? A review of the experiences and outcomes of children and young people in residential special schools and colleges, 46, 2017
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Lindsay, Geoff, Ricketts, Jessie, Peacey, Lindy V., Dockrell, Julie E., Charman, Tony, Meeting the Educational and Social Needs of Children with Language Impairment or Autism Spectrum Disorder: The Parents’ Perspectives, International Journal of Language & Communication Disorders, 51, 495–507, 2016 [<a href="https://pubmed.ncbi.nlm.nih.gov/26952185" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26952185</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Lindsay, S., Child and youth experiences and perspectives of cerebral palsy: A qualitative systematic review, Child: Care, Health and Development, 42, 153–175, 2016 [<a href="https://pubmed.ncbi.nlm.nih.gov/26754030" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26754030</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, the 3 UK post-2013 papers do not meet inclusion criteria</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Lindsay, Sally, Duncanson, Michelle, Niles-Campbell, Nadia, McDougall, Carolyn, Diederichs, Sara, Menna-Dack, Dolly, Applying an ecological framework to understand transition pathways to post-secondary education for youth with physical disabilities, Disability and rehabilitation, 40, 277–286, 2018 [<a href="https://pubmed.ncbi.nlm.nih.gov/27868448" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27868448</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Canada</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Macdonald, Elspeth, Mohay, Heather, Sorensen, Debra, Alcorn, Neil, McDermott, Brett, Lee, Erica, Members of the Mater, Cymhs Infant Mental Health Steering Committee, Current delivery of infant mental health services: are infant mental health needs being met?, Australasian psychiatry : bulletin of Royal Australian and New Zealand College of Psychiatrists, 13, 393–8, 2005 [<a href="https://pubmed.ncbi.nlm.nih.gov/16403138" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 16403138</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Indirect - service not specific to children and young people with disabilities and severe complex needs</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Macintyre, Gillian, The potential for inclusion: young people with learning disabilities experiences of social inclusion as they make the transition from childhood to adulthood, Journal of Youth Studies, 17, 857–871, 2014
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Maniatopoulos, Gregory, Le Couteur, Ann, Vale, Luke, Colver, Allan, Falling through the gaps: exploring the role of integrated commissioning in improving transition from children’s to adults’ services for young people with long-term health conditions in England, Journal of health services research & policy, 23, 107–115, 2018 [<a href="/pmc/articles/PMC5901047/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5901047</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/29475369" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 29475369</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Insufficient information provided to determine if it meets inclusion criteria</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mansell, Ian, Wilson, Christine, ‘It terrifies me, the thought of the future’: Listening to the current concerns of informal carers of people with a learning disability, Journal of Intellectual Disabilities, 14, 21–31, 2010 [<a href="https://pubmed.ncbi.nlm.nih.gov/20630924" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 20630924</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Indirect - includes adults >25 years old</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Marly Akemi Shiroma, Nepomuceno, Roseney, Bellato, Laura Filomena Santos de, Araújo, Leandro Felipe, Mufato, Ways of weaving networks for the care by the family that is experiencing the chronic condition by adrenoleukodystrophy, Ciencia, Cuidado e Saude, 11, 156–165, 2012
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|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Language: Non-English</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Matsushima, Kanae, Kato, Toshihiro, Research on Positive Indicators for Teacher-Child Relationship in Children with Intellectual Disabilities, Occupational therapy international, 22, 206–16, 2015 [<a href="https://pubmed.ncbi.nlm.nih.gov/26301450" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26301450</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
McConkey, R., Adams, L., Matching short break services for children with learning disabilities to family needs and preferences, Child: care, health and development, 26, 429–444, 2000 [<a href="https://pubmed.ncbi.nlm.nih.gov/10998005" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 10998005</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Design: Survey with quantitative data only</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
McKay, Sandra, Immigrant Children With Special Health Care Needs: A Review, Current problems in pediatric and adolescent health care, 49, 45–49, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30777710" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30777710</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Insufficient presentation of included studies and qualitative results</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
McKevitt, Christopher, et al, Seeking normality: parents’ experiences of childhood stroke, Child: Care, 45, 89–95, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30255632" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30255632</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Indirect - 42% described as having ‘no or mild deficit’</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
McLennan, J. D., Perry, R., Multi-informant perspectives on a pilot telepsychiatry behavioral consultation service to schools, Journal of the American Academy of Child and Adolescent Psychiatry, 55, S170, 2016
|
|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
McNeilly, P., Macdonald, G., Kelly, B., The participation of parents of disabled children and young people in health and social care decisions, Child: care, health and development, 43, 839–846, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/28795422" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 28795422</span></a>]
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
McNeilly, Patricia, Macdonald, Geraldine, Kelly, Berni, The participation of disabled children and young people: A social justice perspective, Child Care in Practice, 21, 266–286, 2015
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Meirinhos, Ana Rodríguez, Antolín-Suárez, Lucía, Oliva, Alfredo, Service needs of families of adolescents with mental health difficulties, International Journal of Integrated Care (IJIC), 16, 1–2, 2016
|
|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Mimmo, L., Harrison, R., Time to care: A meta narrative review of the parental experience of hospitalisation with a child with intellectual disability, International Journal for Quality in Health Care, 30, 53, 2018
|
|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Moss, Aidan, Miller, Robin, Models of community based integrated care for people with a learning disability and/or autism: evaluation findings from a national implementation programme, International Journal of Integrated Care (IJIC), 19, 1–2, 2019
|
|
</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
National, Voices, Integrated care: what do patients, service users and carers want?, 13p., 2013
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Insufficient presentation of qualitative results. It is unclear if statements presented are the results of qualitative investigations or just consensus/author opinion</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Neves, E. T., Silveira, A., Arrue, A. M., Pieszak, G. M., Zamberlan, K. C., Santos, R. P., Network of care of children with special health care needs, Texto e Contexto Enfermagem, 24, 399–406, 2015
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Language: Non-English</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
Newlove-Delgado, Tamsin, Ford, Tamsin J., Stein, Ken, Garside, Ruth, ‘You’re 18 Now, Goodbye’: The Experiences of Young People with Attention Deficit Hyperactivity Disorder of The Transition from Child to Adult Services, Emotional & Behavioural Difficulties, 23, 296–309, 2018
|
|
</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Ooi, K. L., Ong, Y. S., Jacob, S. A., Khan, T. M., A meta-synthesis on parenting a child with autism, Neuropsychiatric Disease and Treatment, 12, 745–762, 2016 [<a href="/pmc/articles/PMC4827600/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4827600</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27103804" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27103804</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, the 1 UK post-2013 paper does not meet inclusion criteria</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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O’Reilly, M., Vostanis, P., Taylor, H., Day, C., Street, C., Wolpert, M., Service user perspectives of multiagency working: A qualitative study with children with educational and mental health difficulties and their parents, Child and Adolescent Mental Health, 18, 202–209, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/32847304" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32847304</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Children with educational and mental health difficulties with no mention of severity or complexity of needs.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Pellicano, Elizabeth, et al, My life at school: understanding the experiences of children and young people with special educational needs in residential special schools, 78, xvi, 2014
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No qualitative data relevant to the views or experiences of joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Rafferty, Katherine A., Sullivan, Shelbie L., “You Know the Medicine, I Know My Kid”: How Parents Advocate for Their Children Living With Complex Chronic Conditions, Health communication, 32, 1151–1160, 2017 [<a href="https://pubmed.ncbi.nlm.nih.gov/27588934" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27588934</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: US</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Raghavan, R., Pawson, N., Small, N., Family carers’ perspectives on post-school transition of young people with intellectual disabilities with special reference to ethnicity, Journal of Intellectual Disability Research, 57, 936–46, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/22823005" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 22823005</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Regulation,, Quality Improvement, Authority, Review of brain injury services in Northern Ireland, 61, 2015
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Insufficient presentation of qualitative results</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Richardson, Michelle, Moore, Darren A., Gwernan-Jones, Ruth, Thompson-Coon, Jo, Ukoumunne, Obioha, Rogers, Morwenna, Whear, Rebecca, Newlove-Delgado, Tamsin V., Logan, Stuart, Morris, Christopher, Taylor, Eric, Cooper, Paul, Stein, Ken, Garside, Ruth, Ford, Tamsin J., Non-pharmacological interventions for attention-deficit/hyperactivity disorder (ADHD) delivered in school settings: systematic reviews of quantitative and qualitative research, Health Technology Assessment, 19, 1–470, 2015 [<a href="/pmc/articles/PMC4780980/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC4780980</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/26129788" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 26129788</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, all studies are pre-2013</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Rintell, D., Cross, T., Shanks, A., Fico, C., Duffy, L., Camposano, S., Chitnis, T., Parents’ experience of pediatric multiple sclerosis, Multiple Sclerosis, 20, 66, 2014
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</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Rix, Jonathan, Sheehy, Kieron, Fletcher-Campbell, Felicity, Crisp, Martin, Harper, Amanda, Exploring Provision for Children Identified with Special Educational Needs: An International Review of Policy and Practice, European Journal of Special Needs Education, 28, 375–391, 2013
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, all studies are pre-2013</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Roberts, H., Ingold, A., Liabo, K., Manzotti, G., Reeves, D., Bradby, H., Moving on: Transitions out of care for young people with learning disabilities in England and Sweden, BRITISH JOURNAL OF LEARNING DISABILITIES, 46, 54–63, 2018
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Rome, Aidan, et al, Exploring transitions with disabled young people: our experiences, our rights and our views, Child Care in Practice, 21, 287–294, 2015
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Ruble, K., Jacobson, L., Pare-Blagoev, J., Thinking outside the clinic: Returning to school after diagnosis with childhood cancer, Psycho-Oncology, 27, 79, 2018
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</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Salmon, Jenny, Fetal alcohol spectrum disorder: New Zealand birth mothers’ experiences, The Canadian journal of clinical pharmacology = Journal canadien de pharmacologie clinique, 15, e191–213, 2008 [<a href="https://pubmed.ncbi.nlm.nih.gov/18515921" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 18515921</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: New Zealand</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Samarasinghe, Shane, Now is the time: supporting disabled children and their families, 20, 2018
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Scott, Lee, SEND: The schools and colleges experience. A report to the Secretary of State for Education by Lee Scott, 13, 2016
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Insufficient presentation of qualitative results</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Sezgin, Emre, Weiler, Monica, Weiler, Anthony, Lin, Simon, Proposing an Ecosystem of Digital Health Solutions for Teens With Chronic Conditions Transitioning to Self-Management and Independence: Exploratory Qualitative Study, Journal of medical Internet research, 20, e10285, 2018 [<a href="/pmc/articles/PMC6231785/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC6231785</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/30190253" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30190253</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Indirect - included conditions not limited to disabilities with severe complex needs</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Sheng-li, Wang, Social Work Involved in Sensory Integrative Dysfunction Children Based on Systematic Theory, Jiangnan Daxue Xuebao/Journal of Jiangnan University: Humanities & Social Sciences Edition, 9, 55–60, 2010
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Setting: Non-OECD country (China)</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Simpson, W., Brown, C., Nisbet, N., Metcalfe, R., Claisse, Z., Watson, L., A new model of autism spectrum disorder assessment and diagnosis by multiagency community-based teams in primary schools, Child and Adolescent Mental Health, 18, 187–190, 2013 [<a href="https://pubmed.ncbi.nlm.nih.gov/32847256" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 32847256</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Insufficient presentation of qualitative results</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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tang, Hsin-Yi, Thomas, Emily, Martinson, Jennifer, A Collaborative Approach for Attention Deficit and Hyperactivity Disorder, Communicating Nursing Research, 46, 304–304, 2013
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Abstract only</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Taylor, J., Stalker, K., Stewart, A., Disabled Children and the Child Protection System: A Cause for Concern, Child Abuse Review, 25, 60–73, 2016
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Reports on the same population and themes as <a class="bibr" href="#niceng213er11.s1.ref30" rid="niceng213er11.s1.ref30">Taylor 2014</a>. Additional themes are included in <a class="bibr" href="#niceng213er11.s1.ref30" rid="niceng213er11.s1.ref30">Taylor 2014</a>.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Thompson, A., Senders, A., Borgatti, A., Bodden, K., Usher, C., Seibel, C., Shinto, L., On ‘Dignity’ and Finding a ‘New Path’: A qualitative analysis of participant experiences in the M3 program, Early Intervention in Psychiatry, 10, 195, 2016 [<a href="https://pubmed.ncbi.nlm.nih.gov/31930650" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 31930650</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.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_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Townsley, Ruth, Abbott, David, Watson, Debby, Making a difference? Exploring the impact of multi-agency working on disabled children with complex health care needs, their families and the professionals who support them, 2004
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Publication type: Book</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Trembath, David, Starr, Elizabeth, Supporting children with social communication and learning disabilities and their parents during the transition to school, Journal of Clinical Practice in Speech-Language Pathology, 19, 137–141, 2017
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: Australia</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Trotman, D., Enow, L., Tucker, S., Young people and alternative provision: Perspectives from participatory-collaborative evaluations in three UK local authorities, British Educational Research Journal, 45, 219–237, 2019
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Insufficient description of population but appears to be alternative provision due to behavioural issues and not necessarily disabilities with severe complex needs</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Van Cleave, Jeanne, Boudreau, Alexy Arauz, McAllister, Jeanne, Cooley, W. Carl, Maxwell, Andrea, Kuhlthau, Karen, Care coordination over time in medical homes for children with special health care needs, Pediatrics, 135, 1018–26, 2015 [<a href="/pmc/articles/PMC8194473/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC8194473</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/25963012" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 25963012</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Country: USA</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Webb, Mary Anne, et al, Living with adversity: a qualitative study of families with multiple and complex needs, 94, 2014
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Not children and young people with disabilities and severe complex needs. Multiple and complex needs are referring to poverty, domestic violence, parental illness etc.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Welch, Vicki, Collins, Michelle, Hatton, Chris, Emerson, Eric, Robertson, Janet, Wells, Emma, Langer, Susanne, Short Break and Respite Services for Disabled Children in England: Comparing Children’s and Parents’ Perspectives of Their Impact on Children, Children & Society, 28, 478–494, 2014
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Whicker, John J., Munoz, Karen, Nelson, Lauri H., Parent challenges, perspectives and experiences caring for children who are deaf or hard-of-hearing with other disabilities: a comprehensive review, International journal of audiology, 58, 5–11, 2019 [<a href="https://pubmed.ncbi.nlm.nih.gov/30691361" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 30691361</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, UK post-2013 studies either already included or do not meet inclusion criteria</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Whitaker, E. M., Personalisation in children’s social work: From family support to “the child’s budget”, JOURNAL OF INTEGRATED CARE, 23, 277–286, 2015
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Themes: No views or experiences relevant to joined up care/services.</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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White, S., Spencer, S., A school-commissioned model of speech and language therapy, Child Language Teaching & Therapy, 34, 141–153, 2018
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Population: Mainstream primary schools - motivation for commissioning SLT appears to be high levels of socially disadvantaged children (receiving ‘Pupil Premium’ funding) as opposed to children with disabilities and severe complex needs</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Whittle, E. L., Fisher, K. R., Reppermund, S., Lenroot, R., Trollor, J., Barriers and Enablers to Accessing Mental Health Services for People With Intellectual Disability: A Scoping Review, Journal of Mental Health Research in Intellectual Disabilities, 11, 69–102, 2018
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, UK post-2013 studies are not limited to children/young people</td></tr><tr><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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Zhou, H. Q., Roberts, P., Dhaliwal, S., Della, P., Transitioning adolescent and young adults with chronic disease and/or disabilities from paediatric to adult care services - an integrative review, Journal of Clinical Nursing, 25, 3113–3130, 2016 [<a href="/pmc/articles/PMC5096007/" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pmc">PMC free article<span class="bk_prnt">: PMC5096007</span></a>] [<a href="https://pubmed.ncbi.nlm.nih.gov/27145890" ref="pagearea=body&targetsite=entrez&targetcat=link&targettype=pubmed">PubMed<span class="bk_prnt">: 27145890</span></a>]
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</td><td headers="hd_h_niceng213er11.appj.tab1_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Review. Included list checked for relevant studies, the 2 UK post-2013 studies do not meet inclusion criteria</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">OECD: Organisation for Economic Co-operation and Development; SLT: speech and language therapy Literature search and study selection undertaken for all qualitative questions simultaneously. Therefore, studies listed in this table are those that are excluded from all 3 reviews</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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