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class="bkr_bib"><h1 id="_NBK579710_"><span itemprop="name">Evidence review for views and experiences of service users</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 A</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="niceng213er1.s1"><h2 id="_niceng213er1_s1_">Views and experiences of service users</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 1.1.7, 1.1.13, 1.1.15, 1.1.23, 1.1.24, 1.1.26 - 1.1.28, 1.1.40, 1.3.4, 1.3.7, 1.3.8, 1.4.2, 1.4.15, 1.5.1, 1.5.4, 1.6.4, 1.8.11, 1.8.13, 1.8.14, 1.14.3, 1.15.26, 1.17.6, 1.17.7. Other evidence supporting these recommendations can be found in the evidence reviews on Barriers and facilitators of joined-up care (evidence report K), Views and experiences of service providers (evidence report M).</p><div id="niceng213er1.s1.1"><h3>Review question</h3><p>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?</p><div id="niceng213er1.s1.1.1"><h4>Introduction</h4><p>This review will examine the views and experiences of disabled children and young people with severe complex needs, their families and carers of joined-up care between health, social care and education services. This will be used to identity themes about the acceptability and accessibility of joined up services and the values and preferences of service users.</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="niceng213er1.s1.1.2"><h4>Summary of the protocol</h4><p>See <a class="figpopup" href="/books/NBK579710/table/niceng213er1.tab1/?report=objectonly" target="object" rid-figpopup="figniceng213er1tab1" rid-ob="figobniceng213er1tab1">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="figniceng213er1tab1"><a href="/books/NBK579710/table/niceng213er1.tab1/?report=objectonly" target="object" title="Table 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er1tab1" rid-ob="figobniceng213er1tab1"><img class="small-thumb" src="/books/NBK579710/table/niceng213er1.tab1/?report=thumb" src-large="/books/NBK579710/table/niceng213er1.tab1/?report=previmg" alt="Table 1. Summary of the protocol (PICO table)." /></a><div class="icnblk_cntnt"><h4 id="niceng213er1.tab1"><a href="/books/NBK579710/table/niceng213er1.tab1/?report=objectonly" target="object" rid-ob="figobniceng213er1tab1">Table 1</a></h4><p class="float-caption no_bottom_margin">Summary of the protocol (PICO table). </p></div></div><p>For further details see the review protocol in <a href="#niceng213er1.appa">appendix A</a>.</p></div><div id="niceng213er1.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="#niceng213er1.appa">appendix A</a> and the <a href="/books/NBK579710/bin/niceng213er1_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="niceng213er1.s1.1.4"><h4>Qualitative evidence</h4><div id="niceng213er1.s1.1.4.1"><h5>Included studies</h5><p>A systematic review of the literature was conducted using a combined search. Twenty-three qualitative studies were included in this review: <a class="bibr" href="#niceng213er1.s1.ref1" rid="niceng213er1.s1.ref1">Adams 2017</a>, <a class="bibr" href="#niceng213er1.s1.ref2" rid="niceng213er1.s1.ref2">Adams 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref3" rid="niceng213er1.s1.ref3">Boyce 2015</a>, <a class="bibr" href="#niceng213er1.s1.ref4" rid="niceng213er1.s1.ref4">Brooks 2013</a>, <a class="bibr" href="#niceng213er1.s1.ref5" rid="niceng213er1.s1.ref5">Children’s Commissioner for Wales 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref6" rid="niceng213er1.s1.ref6">Cohen 2017</a>, <a class="bibr" href="#niceng213er1.s1.ref7" rid="niceng213er1.s1.ref7">Council for Disabled Children 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref8" rid="niceng213er1.s1.ref8">Dillenburger 2016</a>, <a class="bibr" href="#niceng213er1.s1.ref9" rid="niceng213er1.s1.ref9">Fox 2017</a>, <a class="bibr" href="#niceng213er1.s1.ref10" rid="niceng213er1.s1.ref10">Griffith 2013</a>, <a class="bibr" href="#niceng213er1.s1.ref11" rid="niceng213er1.s1.ref11">Hurt 2019</a>, <a class="bibr" href="#niceng213er1.s1.ref12" rid="niceng213er1.s1.ref12">Hutton 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref13" rid="niceng213er1.s1.ref13">Kiernan 2019</a>, <a class="bibr" href="#niceng213er1.s1.ref14" rid="niceng213er1.s1.ref14">Kirk 2014</a>, <a class="bibr" href="#niceng213er1.s1.ref15" rid="niceng213er1.s1.ref15">McConkey 2013</a>, <a class="bibr" href="#niceng213er1.s1.ref16" rid="niceng213er1.s1.ref16">National Autistic Society 2015</a>, <a class="bibr" href="#niceng213er1.s1.ref17" rid="niceng213er1.s1.ref17">RIP STARS 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref18" rid="niceng213er1.s1.ref18">Rodriguez 2014</a>, <a class="bibr" href="#niceng213er1.s1.ref19" rid="niceng213er1.s1.ref19">Sales 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref20" rid="niceng213er1.s1.ref20">Skipp 2016</a>, <a class="bibr" href="#niceng213er1.s1.ref21" rid="niceng213er1.s1.ref21">Smith 2014</a>, <a class="bibr" href="#niceng213er1.s1.ref22" rid="niceng213er1.s1.ref22">Thom 2015</a>, and <a class="bibr" href="#niceng213er1.s1.ref23" rid="niceng213er1.s1.ref23">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 joined-up care between education, health and social care services. Data collection methods included: surveys (<a class="bibr" href="#niceng213er1.s1.ref6" rid="niceng213er1.s1.ref6">Cohen 2017</a>), surveys with free text or open ended questions (<a class="bibr" href="#niceng213er1.s1.ref1" rid="niceng213er1.s1.ref1">Adams 2017</a> and <a class="bibr" href="#niceng213er1.s1.ref16" rid="niceng213er1.s1.ref16">National Autistic Society 2015</a>), interviews (<a class="bibr" href="#niceng213er1.s1.ref2" rid="niceng213er1.s1.ref2">Adams 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref14" rid="niceng213er1.s1.ref14">Kirk 2014</a>, <a class="bibr" href="#niceng213er1.s1.ref21" rid="niceng213er1.s1.ref21">Smith 2014</a> and <a class="bibr" href="#niceng213er1.s1.ref22" rid="niceng213er1.s1.ref22">Thom 2015</a>), interviews with group discussions or focus groups (<a class="bibr" href="#niceng213er1.s1.ref12" rid="niceng213er1.s1.ref12">Hutton 2018</a> and RIP STARS), semi structured interviews (<a class="bibr" href="#niceng213er1.s1.ref3" rid="niceng213er1.s1.ref3">Boyce 2015</a>, <a class="bibr" href="#niceng213er1.s1.ref7" rid="niceng213er1.s1.ref7">Council for Disabled Children 2018</a>, <a class="bibr" href="#niceng213er1.s1.ref9" rid="niceng213er1.s1.ref9">Fox 2017</a>, <a class="bibr" href="#niceng213er1.s1.ref10" rid="niceng213er1.s1.ref10">Griffith 2013</a>, <a class="bibr" href="#niceng213er1.s1.ref13" rid="niceng213er1.s1.ref13">Kiernan 2019</a>, <a class="bibr" href="#niceng213er1.s1.ref15" rid="niceng213er1.s1.ref15">McConkey 2013</a>, <a class="bibr" href="#niceng213er1.s1.ref18" rid="niceng213er1.s1.ref18">Rodriguez 2014</a> and <a class="bibr" href="#niceng213er1.s1.ref19" rid="niceng213er1.s1.ref19">Sales 2018</a>), semi-structured interviews and focus groups (<a class="bibr" href="#niceng213er1.s1.ref4" rid="niceng213er1.s1.ref4">Brooks 2013</a>, <a class="bibr" href="#niceng213er1.s1.ref20" rid="niceng213er1.s1.ref20">Skipp 2016</a> and <a class="bibr" href="#niceng213er1.s1.ref23" rid="niceng213er1.s1.ref23">Young 2018</a>), focus groups and online questionnaires (<a class="bibr" href="#niceng213er1.s1.ref5" rid="niceng213er1.s1.ref5">Children’s Commissioner for Wales 2018</a> and <a class="bibr" href="#niceng213er1.s1.ref11" rid="niceng213er1.s1.ref11">Hurt 2019</a>), and questionnaires with free text questions and focus groups (<a class="bibr" href="#niceng213er1.s1.ref8" rid="niceng213er1.s1.ref8">Dillenburger 2016</a>).</p><p>Study populations included disabled children and young people with severe complex needs and their families and carers</p><p>The included studies are summarised in <a class="figpopup" href="/books/NBK579710/table/niceng213er1.tab2/?report=objectonly" target="object" rid-figpopup="figniceng213er1tab2" rid-ob="figobniceng213er1tab2">Table 2</a>.</p><p>See the literature search strategy in <a href="#niceng213er1.appb">appendix B</a> and study selection flow chart in <a href="#niceng213er1.appc">appendix C</a>.</p></div><div id="niceng213er1.s1.1.4.2"><h5>Excluded studies</h5><p>Studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er1.appj">appendix J</a>.</p></div></div><div id="niceng213er1.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/NBK579710/table/niceng213er1.tab2/?report=objectonly" target="object" rid-figpopup="figniceng213er1tab2" rid-ob="figobniceng213er1tab2">Table 2</a>.</p><div class="iconblock whole_rhythm clearfix ten_col table-wrap" id="figniceng213er1tab2"><a href="/books/NBK579710/table/niceng213er1.tab2/?report=objectonly" target="object" title="Table 2" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er1tab2" rid-ob="figobniceng213er1tab2"><img class="small-thumb" src="/books/NBK579710/table/niceng213er1.tab2/?report=thumb" src-large="/books/NBK579710/table/niceng213er1.tab2/?report=previmg" alt="Table 2. Summary of included studies." /></a><div class="icnblk_cntnt"><h4 id="niceng213er1.tab2"><a href="/books/NBK579710/table/niceng213er1.tab2/?report=objectonly" target="object" rid-ob="figobniceng213er1tab2">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="#niceng213er1.appd">appendix D</a>. No meta-analysis was conducted (and so there are no forest plots in <a href="#niceng213er1.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>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>A need for effective communication</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>Diagnosis as fundamental to accessing the necessary service provisions</div></li><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Need for professionals and staff to be trained properly</div></li><li class="half_rhythm"><div>Service provisions for transition need to be improved</div></li><li class="half_rhythm"><div>Budgets made a difference to the care received</div></li><li class="half_rhythm"><div>Short breaks and respite breaks provide benefit</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 <a class="figpopup" href="/books/NBK579710/figure/niceng213er1.fig1/?report=objectonly" target="object" rid-figpopup="figniceng213er1fig1" rid-ob="figobniceng213er1fig1">Figure 1</a>; see <a href="#niceng213er1.appl">appendix L</a> for sub-theme maps).</p><div class="iconblock whole_rhythm clearfix ten_col fig" id="figniceng213er1fig1" co-legend-rid="figlgndniceng213er1fig1"><a href="/books/NBK579710/figure/niceng213er1.fig1/?report=objectonly" target="object" title="Figure 1" class="img_link icnblk_img figpopup" rid-figpopup="figniceng213er1fig1" rid-ob="figobniceng213er1fig1"><img class="small-thumb" src="/books/NBK579710/bin/niceng213er1f1.gif" src-large="/books/NBK579710/bin/niceng213er1f1.jpg" alt="Figure 1. Theme map." /></a><div class="icnblk_cntnt" id="figlgndniceng213er1fig1"><h4 id="niceng213er1.fig1"><a href="/books/NBK579710/figure/niceng213er1.fig1/?report=objectonly" target="object" rid-ob="figobniceng213er1fig1">Figure 1</a></h4><p class="float-caption no_bottom_margin">Theme map. </p></div></div></div><div id="niceng213er1.s1.1.6"><h4>Summary of the qualitative evidence</h4><p>The evidence generated 13 main themes from the views and experiences of children and young people with severe complex needs and their families and carers. Fourteen studies provided evidence relating to building good relationships with professionals and staff. Ten studies provided evidence relating to the importance of accessing information and advice. Twelve studies provided evidence relating to a need for effective communication. Thirteen studies provided evidence relating to feeling disillusioned/that services do not fully meet the needs of children or young people. Six studies provided evidence relating to diagnosis. Seven studies provided evidence relating to the effects of education and health care plans on service provisions. Eight studies provided evidence relating to perceptions about the involvement of the child or young person. Nine studies provided evidence relating to the opinions of parents and carers. One study provided evidence relating to training for professionals and staff. Six studies provided evidence relating to provisions for transition. Four studies provided evidence relating to budgets. Four studies provided evidence relating to short and respite breaks. The quality of the evidence ranged from very low to high.</p><p>See <a href="#niceng213er1.appf">appendix F</a> for full GRADE-CERQual tables.</p></div><div id="niceng213er1.s1.1.7"><h4>Economic evidence</h4><div id="niceng213er1.s1.1.7.1"><h5>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/NBK579710/bin/niceng213er1_bm2.pdf">Supplement B</a> for details.</p></div><div id="niceng213er1.s1.1.7.2"><h5>Excluded studies</h5><p>Economic studies not included in this review are listed, and reasons for their exclusion are provided in <a href="#niceng213er1.appj">appendix J</a>.</p></div></div><div id="niceng213er1.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="niceng213er1.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="niceng213er1.s1.1.10"><h4>Evidence statements</h4><div id="niceng213er1.s1.1.10.1"><h5>Economic</h5><p>No economic studies were identified which were applicable to this review question.</p></div></div><div id="niceng213er1.s1.1.11"><h4>The committee’s discussion and interpretation of the evidence</h4><div id="niceng213er1.s1.1.11.1"><h5>The outcomes that matter most</h5><p>The review focussed on the views and experiences of disabled children and young people with severe complex needs, their families and carers of joined-up care between health, social care and education services. 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</p></div><div id="niceng213er1.s1.1.11.2"><h5>The quality of the evidence</h5><p>The evidence was assessed using GRADE-CERQual methodology and the overall quality ranged from low to high. Concerns about the methodological limitations of the primary studies were assessed with the CASP checklist and ranged from “major” to “minor”. The most common issues were lack of consideration of the relationship between researcher and participants, an absence of a clear statement of findings, somewhat limited detail provided on data analysis, no discussion of informed consent issues and no detail on how research was described to participants, potential for recruitment bias, no justification for the data collection methods and setting, and limited or an absence of discussion of the contribution to the literature. Concerns about coherence ranged from “minor” to “no or very minor”. For the majority of review findings concerns were “no or very minor”, as there was no data that contradicted the findings nor was there ambiguous data. A small number of review findings demonstrated minor concerns due to vaguely described data in the underlying body of evidence. Concerns about relevance were “no 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 “moderate” to “no or very minor”. There were moderate concerns for review findings when evidence offered some rich data and minor concerns for review findings that were based on evidence offering moderately rich data. The number of studies used for each review finding ranged from 1 to 8.</p><p>The quality of the review findings is summarised here according to the over-arching themes and sub-themes:
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<ul class="simple-list"><li class="half_rhythm"><div>Main theme 1: Desire to build good relationships with professionals and staff:
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<ul><li class="half_rhythm"><div>Sub-theme 1.1: Families/carers were unacquainted with professionals/staff and were unaware of their role in providing care for the child/young person. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.2: Individual professionals/staff were valued as a source of support, expertise and advice. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.3: The opportunity to meet with professionals produced positive feelings. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.4: Having a good rapport with staff was valued and appreciated. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.5: Lack of time to communicate with professionals and staff produced feelings of anxiety. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 1.6: Wanting to be kept informed on the progression of care. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 2: Access to information and advice was important:
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<ul><li class="half_rhythm"><div>Sub-theme 2.1: One particular service provided the necessary information and support. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 2.2: Peer support as a beneficial source of information. 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 advice was needed. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 2.4: Feeling a need to proactively locate the necessary information from other sources. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 2.5: Frustration due to information that is out of date. The overall quality of this sub-theme was judged to be high.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 3: A need for effective communication:
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<ul><li class="half_rhythm"><div>Sub-theme 3.1: Staff and professionals should tailor communication to suit the individual and circumstances. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 3.2: Difficult to understand complicated terminology. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 4: Difficulty in navigating the service system:
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<ul><li class="half_rhythm"><div>Sub-theme 4.1: Repeating the same information was exhausting and produced negative feelings. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 4.2: Getting the necessary care demanded significant energy and organisation. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 4.3: Feeling a need to constantly fight for the necessary support. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 5: Feeling disillusioned/that services do not fully meet the needs of children or young people:
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<ul><li class="half_rhythm"><div>Sub-theme 5.1: Opting out of seeking support due to disillusion of statutory provision. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.2: Distrust of services to take care of child young person when the parent is unable to. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.3: Frustration in lack of clarity as to how resources would be allocated. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 5.4: Lack of good quality support and input from services. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.5: Parents have felt the need to give up work to support the child. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 5.6: Need for specialist support or special provisions. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 6: Diagnosis as fundamental to accessing the necessary service provisions.
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<ul><li class="half_rhythm"><div>Sub-theme 6.1: Acceptance of an inaccurate diagnosis to access available resources. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 6.2: Improved access to services post diagnosis led to feelings of relief when receiving diagnosis. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 6.3: Frustration with the time taken and difficulty in obtaining a diagnosis. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 6.4: Questioning why medical history needs to be disclosed for access to services. The overall quality of this sub-theme was judged to be low.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 7: The effects of EHC plans on service provisions:
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<ul><li class="half_rhythm"><div>Sub-theme 7.1: EHC plans led to improvements in support and/or outcomes of the child/young person. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 7.2: EHC plans provided reassurance that support will be in place to meet the needs of the child/young person. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 7.3: EHC plans were considered a good reflection of the individuality of the child/young person. The overall quality of this sub-theme was judged to be low.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 8: Perceptions about the involvement of the children or young person:
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<ul><li class="half_rhythm"><div>Sub-theme 8.1: Children and young people felt positively about their involvement. The overall quality of this sub-theme was judged to be low.</div></li><li class="half_rhythm"><div>Sub-theme 8.2: Observations that the child/young person grew in confidence over a period of involvement. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 8.3: Feeling that input from the child or young person would lead to a more accurate reflection of their support needs. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 8.4: Children and young people had various levels of ability which affected their level of involvement and understanding. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 9: Parents and carers wanted their opinions about the child/young person to be heard:
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<ul><li class="half_rhythm"><div>Sub-theme 9.1: Parents/carers felt positively when given the opportunity to provide their views. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.2: Parents expressed negative feelings when their views were ignored. The overall quality of this sub-theme was judged to be high.</div></li><li class="half_rhythm"><div>Sub-theme 9.3: Parents felt they had expert knowledge about their child/young person. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 9.4: Praise for practitioners who valued the expertise of parents but maintained appropriate boundaries. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 10: Need for professionals and staff to be trained properly:
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<ul><li class="half_rhythm"><div>Sub-theme 10.1: Experiencing negative consequences due to inadequate understanding of the child/young person’s needs. The overall quality of sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 11: Service provisions for transition need to be improved:
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<ul><li class="half_rhythm"><div>Sub-theme 11.1: Transitioning through education services was challenging and produced varied experiences. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 11.2: Variation in age of transition across regions and services. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 11.3: Parents felt shut out once the child/young person reached adulthood. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 11.4: Reduction in support following transition. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 11.5: Transition was experienced as a period of uncertainty and stress. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 12: Budgets made a difference to the care received:
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<ul><li class="half_rhythm"><div>Sub-theme 12.1: Belief or experience that personal budgets or direct payments would make a positive impact. The overall quality of this sub-theme was judged to be moderate.</div></li><li class="half_rhythm"><div>Sub-theme 12.2: Uncertainty around the entitlement to, or effectiveness of personal budgets or direct payments. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li><li class="half_rhythm"><div>Main theme 13: Short breaks and respite breaks provide benefit:
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<ul><li class="half_rhythm"><div>Sub-theme 13.1: Short breaks and respite breaks benefit the child/young person and the whole family. The overall quality of this sub-theme was judged to be moderate.</div></li></ul></div></li></ul></p></div><div id="niceng213er1.s1.1.11.3"><h5>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.</p><p>There was moderate quality evidence from sub-themes 1.4, 6.3, 9.3 and 9.4 that parents felt they had expert knowledge about their child or young person, stemming from knowing their child or young person best, intense caring responsibilities and being the person most alert to changes. Service users reported praise for practitioners who valued the expertise of parents but maintained appropriate boundaries. Additionally, service users felt that some professionals did not have the experience or appropriate knowledge to make diagnoses, or exhibited a watchful-wait policy that in some circumstances conflicted with the interests of parents who were living with the child or young person and felt their concerns were undermined or dismissed. Therefore, a recommendation was made for closer working with children, young people and their families so practitioners could draw on their expertise from their lived experience and build a positive working relationship with them, to better understand their needs [1.1.7].</p><p>There was moderate quality evidence from sub-theme 1.5 that a lack of time to communicate with professionals and staff produced feelings of anxiety amongst service users. Specifically, service users reported feeling as though they were not given adequate time to ensure they were providing their child’s exercise therapy in the correct way. In reflection of the evidence, the committee discussed the importance of providing both training and ongoing supervision. They were aware of current relevant guidance from the Care Quality Commission, the Nursing and Midwifery Council, the Royal College of Nursing and other professional governance organisations allied to medicine about training and competency. The committee agreed to recommend that practitioners follow this guidance to ensure that families and carers not only feel capable and confident to deliver delegated clinical tasks but are also competent and supported, and mechanisms are put in place for them to report problems should they occur [1.15.26].</p><p>There was moderate quality evidence from sub-themes 1.6 and 6.3 that services users wanted to be kept up-to-date with the progress of their child’s or young person’s care, including the drafting and progressing of their EHC plan, and providing adequate services and care regimens. Additionally, in sub-theme 4.2 service users expressed the need to expend a considerable amount of time and energy in order to constantly chase services for information, and frustration with the time taken and difficulty in obtaining a diagnosis. Families felt stressed and frustrated by the lack of information around delays, whilst families that were kept informed felt more positively. Therefore, the committee recommended that children, young people and their families be kept updated on the progress of their care, support, assessments and their EHC plan, and that the reasons for any delays should be explained [1.1.23]. They also recommended that practitioners use their knowledge about the responsibilities of other people and services to provide more wide-ranging and coordinated support and information to children and young people and their families, to reduce the number of different people they have to contact [1.14.3].</p><p>There was moderate quality evidence from sub-theme 2.2 that service users benefited from speaking to other peers who had experience with the system. Therefore, the committee recommended that children, young people and their families be told how to access peer support [1.1.24]. In the committee’s experience practitioners providing information on peer support groups would have a professional duty of care to make sure that any sources of support they provide is quality assured.</p><p>There was low, moderate and high quality evidence from sub-themes 2.3, 2.4 and 2.5, respectively, that service users needed more information and advice, including on their role in parenting, caring and supporting the child or young person. Service users felt that not all the necessary information was provided on aspects of the chid or young person’s care such as policy, planning, process, service structures, assessment, and diagnosis, and that the support provided was limited and often based on out-dated information. There was moderate quality evidence from sub-theme 1.1 that families and carers were unacquainted with service providers and were unaware of their role in providing care for the child or young person. Confusion about the number and purpose of appointments was reported, and concerns about the people working in the service that were unknown to them. Therefore, the committee recommended that children, young people and their families are given up-to-date information and advice including information on delays or changes about the process and purpose of assessment and diagnosis, the care and support they are receiving, meetings they will be involved in and how to contribute their views, and relevant policies and processes. They made a strong recommendation that children, young people and their families are informed by education, health and social care services about the roles of the practitioners and services that are currently supporting them, and any services that they have been referred to for future support as having this information is necessary to providing high quality care [1.1.23].</p><p>There was low quality evidence from sub-theme 3.1 that service users appreciated when staff and professionals adapted their communication style to suit the individual and circumstances, including when delivering a diagnosis when feelings of shock, confusion, denial, upset and sadness were apparent. The committee discussed that ideally, practitioners would be used to dealing with sensitive conversations effectively as this is a corner stone of good practice. However, since the evidence had identified this doesn’t always happen, the committee made strong recommendations to prompt staff and professionals to be empathetic and supportive when talking to children, young people and their families [1.1.13] and to address their feelings and help them to understand and reflect on the information they have received [1.1.15]. The committee also recommended, based on their knowledge and experience, that practitioners consider recording meetings so that service users have the opportunity to review the content in their own private space as it often takes time for people to assimilate the information they have been given, particularly when it involves a significant or life-changing event [1.1.40]. Recording of meetings would have to be done in line with local policies on information governance and consent.</p><p>There was moderate quality evidence from sub-theme 3.2 that service users found it difficult to understand complicated terminology. The committee agreed to cross reference relevant recommendations on communicating and discussing complex information, and on tailoring information to individuals in NICE’s guideline on babies, children and young people’s experience of healthcare, and NICE’s guideline on patient experience in adult NHS services [1.1.27]. This recommendation would be particularly relevant to those with cognitive impairments and communication needs and disorders.</p><p>There was moderate quality evidence from sub-theme 5.1 that service users felt disillusionment with statutory provisions and reported feeling little point in requesting help, leading to occasions where they opted out of seeking support. The committee felt that by speaking to and involving service users, this could potentially improve statutory provisions and subsequently reduce the disillusionment felt regarding current services. Therefore, the committee recommended that when commissioning services, commissioners should speak to disabled children, young people and their families, to find out what support they need, and involve them in the planning of services [1.17.6]. This aligns with the committee’s understanding of the SEND Code of Practice (2015) that children and young people with special educational needs and disabilities and their parents must be engaged in commissioning decisions, so that users’ experiences, ambitions and expectations can shape decisions on the services provided. For the same reasons, the committee agreed that disabled children and young people should be involved in the review of existing services. This also aligned with the committee’s understanding of the SEND Code of Practice (2015) that children and young people with special educational needs and disabilities and their parents need to be consulted when reviewing educational, training and social care provision [1.17.7].</p><p>There was moderate quality evidence from sub-theme 5.2 that service users felt distrust in services’ ability to take care of the child or young person when they were unable to, for example when they became too old, fragile or vulnerable to push for services, or when they were deceased. The committee discussed their experience and relayed seeing parents and carers get worn down as time goes by; an evolutionary process resulting from looking after a child or young person with severe complex needs for a substantial number of years. It was agreed that a longer term view was needed, and the committee recommended that interagency teams provide information about the emotional and practical support options available to help service users make arrangements for when they cannot care for their child [1.6.4].</p><p>There was high quality evidence from sub-theme 5.3 that service users felt frustrated due to a lack of clarity about how resources would be allocated to the child or young person. To remedy this, the committee recommended that children, young people and their families are signposted to SEND Information, Advice and Support Services so they can be given clear information about the criteria for funding and support [1.3.8].</p><p>There was moderate quality evidence from sub-theme 5.4 that service users did not receive the level of support or input that they had expected from services. The committee agreed that in order to understand and potentially meet the expectations of service users, they would first need to be aware of what those expectations might be. Therefore, the committee recommended asking children and young people and their parents what they expect from services [1.1.26]. In practice it may not be possible to meet all expectations, therefore the committee recommended explaining what services are available whilst families wait for a needs assessment, the criteria for accessing them [1.3.7], and the reasons why expectations cannot be met and exploring alternatives [1.1.26].</p><p>There was moderate quality evidence from sub-theme 8.4 of differing views regarding the involvement of children and young people. Whilst some service users felt that participation was inappropriate for their child or young person due to their age, or the nature of their special educational need or disability, others described attempts to fully involve the child or young person as positive. Therefore, the committee recommended asking children and young people how they would like to be involved in practitioner led review meetings about them, to facilitate their involvement as much as possible [1.1.28].</p><p>There was moderate and high quality evidence from sub-themes 9.1 and 9.2 that parents and carers felt positively when given the opportunity to provide their views, and conversely expressed negative feelings when their views were ignored. Most of the evidence related to EHC plans, where parents and carers felt negatively when comments on draft EHC plans were ignored, and positively when their involvement in the EHC process was valued and they had the opportunity to make amendments to the child or young person’s EHC plan. The committee discussed that parents and carers had lived experience with the child or young person and had an important understanding of their associated needs. The committee felt it to be key to communicate to the parents and carers the value of their point of view, and to demonstrate this by clarifying to them how their concerns have been incorporated into the EHC plan. The committee recommended taking the views of parents and carers into account and explaining how their concerns have been addressed in the EHC plan, and if the concerns of the parent or carer cannot be addressed, explain why [1.4.2; 1.4.15]. They also agreed that if concerns cannot be addressed, it was important to record the reasons why because in the committees experience this would prevent disputes over what was said or agreed as this information isn’t currently routinely recorded.</p><p>There was moderate quality evidence from sub-themes 1.3 and 10.1 that service users had experienced negative consequences due to inadequate understanding of the child’s needs, and conversely felt positively when given the opportunity to meet with professionals face-to-face to discuss the needs of the child or young person. The committee discussed that understanding the child’s needs may protect against negative consequences, therefore it was recommended that all practitioners involved in making decisions about a child or young person’s support should get to know them well enough to understand their needs [1.1.7].</p><p>There was moderate quality evidence from sub-theme 11.3 that parents felt shut out once the child or young person reached adulthood, specifically that their experience of supporting the child or young person was often ignored once the child or young person reached adult services. The committee agreed that it was important for parents to be prepared beforehand about potential changes to their decision making ability once the young person reached adulthood and so made a strong recommendation. Based on their experience, the committee agreed that similar preparation was important for young people [1.8.11]</p><p>There was moderate quality evidence from sub-theme 11.4 that service users experienced a loss of, or reduction in support following transition to adult services, particularly in children and young people with more complex, specialised needs. This was consistent with evidence from the qualitative review of barriers and facilitators of joined-up care (see evidence report K, sub-theme 6.4). The committee were aware of existing NICE guidance on transition that made recommendations on continuity of support that were relevant to the population of this guideline and so cross-referenced these [1.8.14]</p><p>There was moderate quality evidence from sub-theme 11.5 that service users experienced transition as a period of uncertainty and stress. The committee agreed that transition is not as well coordinated as other milestones. Based on their experience, they recommended the information related to transition that would need to be provided to make sure young people know what to expect. This was information about the adults needs assessment, timing of appointments, when decisions will be made, which services will be involved in their care during and after transition and what happens to their support if their EHC plan stops. They agreed that provision of this information would help service users know what to expect and so made a strong recommendation to that effect [1.8.13]. The committee also agreed to cross reference the NICE guideline on transition from children’s to adults’ services for young people using health or social care services [1.8.14].</p><p>There was moderate quality evidence from sub-theme 12.2 that service users felt uncertainty around the entitlement to, or effectiveness of personal budgets or direct payments. They were unsure what the funds could be used to purchase, whether they improved the child’ or young person’s access to services, and whether either would be applicable to their individual circumstances. The committee agreed that more information should be provided to children, young people and families to remedy this gap in understanding [1.5.1]. In addition, service users in sub-theme 12.2 expressed concerns about uneven provision, shortages in provision and a reduction in services, as a result of personal budgets and direct payments. Service users did not want to be disadvantaged and expressed concerns around having to prioritise within the constraints of a limited budget which may not be equivalent to the level of funding which is already available. There was moderate quality evidence from sub-theme 4.3 that service users felt a need to constantly fight for the necessary support. Provision and resources were not always forthcoming and service users needed to make requests and at times demands, to receive the necessary support. The committee agreed that families should not bear the responsibility of driving processes forward (particular in relation to EHC needs assessment and plans) and so recommended that practitioners should support families with this [1.3.4]. The committee noted, based on their experience, that sometimes direct payments made by the local authority to provide the services agreed in the needs assessment is only enough to cover the service itself but not any ancillary costs; for example the payment covers the cost of a social activity but not the transport costs needed to access this activity. As a consequence, activities that the child or young personal may have enjoyed previously may no longer be affordable. Therefore, the committee recommended that local authorities assess the full cost of providing the services proposed in the needs assessment [1.5.4].</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 1.3.5, see evidence reports K and M), 4.1 (recommendation 1.1.53, see evidence report M), 6.1, 6.2 and 6.3 (recommendation 1.17.4, see evidence report C), and 8.1, 8.2 and 8.3 (recommendation 1.1.23, see evidence report B). For other themes, the evidence available was not sufficient to support a recommendation because it was moderate quality evidence for an intervention or service that would potentially have a large resource impact (sub-theme 11.2), did not provide enough information about how to address the issue raised by the evidence (sub-themes 1.2, 5.5, 5.6, 6.4 and 11.1) or it was a comment on an intervention without evidence of its effectiveness (sub-themes 12.1 and 13.1). Finally, there were some sub-themes (sub-theme 7.1, 7.2 and 7.3) commenting on the perceived impact of EHC plans. These are now statutory requirements and so it was outside the remit of this guideline to make recommendations in this area.</p></div><div id="niceng213er1.s1.1.11.4"><h5>Cost effectiveness and resource use</h5><p>No existing economic evidence was identified for this review.</p><p>The committee discussed the financial implications associated with the recommendation to provide training and ongoing supervision for parents who are delegated clinical tasks. The committee confirmed that this recommendation reflects current practice and would not have resource implications for services. The committee explained that the implementation of existing guidance is variable, i.e. the standard of training and support available is inconsistent across the country, with some pockets of poor practice. The recommendations in this area should make practice less variable.</p><p>The committee discussed the recommendation around considering recording appointments so the child or young person and their family can review the content later. The committee explained that keeping a record of appointments is standard practice across all three sectors but the format used to do so is variable, with audio and video recordings being more prevalent in health around significant or life-changing events in an individual’s care pathway. Given that this recommendation was not based on evidence, the committee were not able to specify a particular format for keeping a record of appointments. They acknowledged that there could be costs associated with acquiring equipment if services chose to make audio or video recordings, but since the recommendation was flexible about the method of keeping a record, they did not expect it to result in significant additional resource requirements for services.</p><p>All other recommendations are either about providing information, already a requirement of the legislation or statutory guidance or represent current practice for most services and would not have significant resource implications. There may be modest resource implications where practices are sub-optimal or services are underperforming.</p></div></div><div id="niceng213er1.s1.1.12"><h4>Recommendations supported by this evidence review</h4><p>This evidence review supports recommendations 1.1.7, 1.1.13, 1.1.15, 1.1.23, 1.1.24, 1.1.26 - 1.1.28, 1.1.40, 1.3.4, 1.3.7, 1.3.8, 1.4.2, 1.4.15, 1.5.1, 1.5.4, 1.6.4, 1.8.11, 1.8.13, 1.8.14, 1.14.3, 1.15.26, 1.17.6, 1.17.7. Other evidence supporting these recommendations can be found in the evidence reviews on Barriers and facilitators of joined-up care (evidence report K), Views and experiences of service providers (evidence report M).</p></div></div><div id="niceng213er1.s1.rl.r1"><h3>References – included studies</h3><ul class="simple-list"><div id="niceng213er1.s1.rl.r1.1"><h4>Qualitative</h4><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er1.s1.ref1"><p id="p-555">
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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="niceng213er1.s1.ref2"><p id="p-556">
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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="niceng213er1.s1.ref3"><p id="p-557">
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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="niceng213er1.s1.ref4"><p id="p-558">
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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="niceng213er1.s1.ref5"><p id="p-559">
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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="niceng213er1.s1.ref6"><p id="p-560">
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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="niceng213er1.s1.ref7"><p id="p-561">
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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="niceng213er1.s1.ref8"><p id="p-562">
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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="niceng213er1.s1.ref9"><p id="p-563">
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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="niceng213er1.s1.ref10"><p id="p-564">
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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="niceng213er1.s1.ref11"><p id="p-565">
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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="niceng213er1.s1.ref12"><p id="p-566">
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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="niceng213er1.s1.ref13"><p id="p-567">
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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="niceng213er1.s1.ref14"><p id="p-568">
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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="niceng213er1.s1.ref15"><p id="p-569">
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<strong>McConkey 2013</strong>
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</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="niceng213er1.s1.ref16"><p id="p-570">
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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="niceng213er1.s1.ref17"><p id="p-571">
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<strong>RIP STARS 2018</strong>
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</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="niceng213er1.s1.ref18"><p id="p-572">
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<strong>Rodriguez 2014</strong>
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</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="niceng213er1.s1.ref19"><p id="p-573">
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<strong>Sales 2018</strong>
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</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="niceng213er1.s1.ref20"><p id="p-574">
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<strong>Skipp 2016</strong>
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</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="niceng213er1.s1.ref21"><p id="p-575">
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<strong>Smith 2014</strong>
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</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="niceng213er1.s1.ref22"><p id="p-576">
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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="niceng213er1.s1.ref23"><p id="p-577">
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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="niceng213er1.s1.rl.r1.2"><h4>Other</h4><ul class="simple-list"><li class="half_rhythm"><p><div class="bk_ref" id="niceng213er1.s1.ref24"><p id="p-578">
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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="niceng213er1.appa"><h3>Appendix A. Review protocols</h3><p id="niceng213er1.appa.et1"><a href="/books/NBK579710/bin/niceng213er1-appa-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Review protocol for review question: 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, 193K)</span></p></div><div id="niceng213er1.appb"><h3>Appendix B. Literature search strategies</h3><div id="niceng213er1.appb.s1"><h4>Literature search strategies for review question: 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?</h4></div><div id="niceng213er1.appb.s2"><h4>Databases: Medline; Medline EPub Ahead of Print; and Medline In-Process & Other Non-Indexed Citations</h4><p id="niceng213er1.appb.et1"><a href="/books/NBK579710/bin/niceng213er1-appb-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (129K)</span></p></div><div id="niceng213er1.appb.s3"><h4>Databases: Embase; and Embase Classic</h4><p id="niceng213er1.appb.et2"><a href="/books/NBK579710/bin/niceng213er1-appb-et2.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (129K)</span></p></div><div id="niceng213er1.appb.s4"><h4>Database: Health Management Information Consortium (HMIC)</h4><p id="niceng213er1.appb.et3"><a href="/books/NBK579710/bin/niceng213er1-appb-et3.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (119K)</span></p></div><div id="niceng213er1.appb.s5"><h4>Database: Social Policy and Practice</h4><p id="niceng213er1.appb.et4"><a href="/books/NBK579710/bin/niceng213er1-appb-et4.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (113K)</span></p></div><div id="niceng213er1.appb.s6"><h4>Database: PsycInfo</h4><p id="niceng213er1.appb.et5"><a href="/books/NBK579710/bin/niceng213er1-appb-et5.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (127K)</span></p></div><div id="niceng213er1.appb.s7"><h4>Database: Emcare</h4><p id="niceng213er1.appb.et6"><a href="/books/NBK579710/bin/niceng213er1-appb-et6.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (126K)</span></p></div><div id="niceng213er1.appb.s8"><h4>Databases: Cochrane Central Register of Controlled Trials (CCTR); and Cochrane Database of Systematic Reviews (CDSR)</h4><p id="niceng213er1.appb.et7"><a href="/books/NBK579710/bin/niceng213er1-appb-et7.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (129K)</span></p></div><div id="niceng213er1.appb.s9"><h4>Database: Database of Abstracts of Reviews of Effects (DARE)</h4><p id="niceng213er1.appb.et8"><a href="/books/NBK579710/bin/niceng213er1-appb-et8.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (113K)</span></p></div><div id="niceng213er1.appb.s10"><h4>Database: Applied Social Sciences Index & Abstracts (ASSIA)</h4><p id="niceng213er1.appb.et9"><a href="/books/NBK579710/bin/niceng213er1-appb-et9.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (116K)</span></p></div><div id="niceng213er1.appb.s11"><h4>Databases: Social Services Abstracts; Sociological Abstracts; and ERIC (Education Resources Information Centre)</h4><p id="niceng213er1.appb.et10"><a href="/books/NBK579710/bin/niceng213er1-appb-et10.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (101K)</span></p></div><div id="niceng213er1.appb.s12"><h4>Database: British Education Index</h4><p id="niceng213er1.appb.et11"><a href="/books/NBK579710/bin/niceng213er1-appb-et11.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (104K)</span></p></div><div id="niceng213er1.appb.s13"><h4>Database: CINAHL Plus (Cumulative Index to Nursing and Allied Health Literature)</h4><p id="niceng213er1.appb.et12"><a href="/books/NBK579710/bin/niceng213er1-appb-et12.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (103K)</span></p></div><div id="niceng213er1.appb.s14"><h4>Database: Social Sciences Citation Index (SSCI)</h4><p id="niceng213er1.appb.et13"><a href="/books/NBK579710/bin/niceng213er1-appb-et13.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (113K)</span></p></div><div id="niceng213er1.appb.s15"><h4>Database: Social Care Online</h4><p id="niceng213er1.appb.et14"><a href="/books/NBK579710/bin/niceng213er1-appb-et14.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Download PDF</a><span class="small"> (103K)</span></p></div></div><div id="niceng213er1.appc"><h3>Appendix C. Qualitative evidence study selection</h3><p id="niceng213er1.appc.et1"><a href="/books/NBK579710/bin/niceng213er1-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, 126K)</span></p></div><div id="niceng213er1.appd"><h3>Appendix D. Qualitative evidence</h3><p id="niceng213er1.appd.et1"><a href="/books/NBK579710/bin/niceng213er1-appd-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Evidence tables for review question: 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, 595K)</span></p></div><div id="niceng213er1.appe"><h3>Appendix E. Forest plots</h3><div id="niceng213er1.appe.s1"><h4>Forest plots for review question: 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?</h4><p>No meta-analysis was conducted for this review question and so there are no forest plots.</p></div></div><div id="niceng213er1.appf"><h3>Appendix F. GRADE-CERQual tables</h3><p id="niceng213er1.appf.et1"><a href="/books/NBK579710/bin/niceng213er1-appf-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">GRADE-CERQual tables for review question: 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, 412K)</span></p></div><div id="niceng213er1.appg"><h3>Appendix G. Economic evidence study selection</h3><div id="niceng213er1.appg.s1"><h4>Economic evidence study selection for review question: 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?</h4><p>One global search was undertaken – please see <a href="/books/NBK579710/bin/niceng213er1_bm2.pdf">Supplement B</a> for details on study selection.</p></div></div><div id="niceng213er1.apph"><h3>Appendix H. Economic evidence tables</h3><div id="niceng213er1.apph.s1"><h4>Economic evidence tables for review question: 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?</h4><p>No evidence was identified which was applicable to this review question.</p></div></div><div id="niceng213er1.appi"><h3>Appendix I. Economic model</h3><div id="niceng213er1.appi.s1"><h4>Economic model for review question: 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?</h4><p>No economic analysis was conducted for this review question.</p></div></div><div id="niceng213er1.appj"><h3>Appendix J. Excluded studies</h3><div id="niceng213er1.appj.s1"><h4>Excluded studies for review question: 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?</h4></div><div id="niceng213er1.appj.s2"><h4>Qualitative studies</h4><p id="niceng213er1.appj.tab1"><a href="/books/NBK579710/table/niceng213er1.appj.tab1/?report=objectonly" target="object" rid-ob="figobniceng213er1appjtab1" class="figpopup">Table 18. Excluded studies and reasons for their exclusion</a></p></div><div id="niceng213er1.appj.s3"><h4>Economic studies</h4><p>No economic evidence was identified for this review. See <a href="/books/NBK579710/bin/niceng213er1_bm2.pdf">Supplement B</a> for further information.</p></div></div><div id="niceng213er1.appk"><h3>Appendix K. Research recommendations – full details</h3><div id="niceng213er1.appk.s1"><h4>Research recommendations for review question: 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?</h4><p>No research recommendations were made for this review question.</p></div></div><div id="niceng213er1.appl"><h3>Appendix L. Qualitative thematic maps</h3><p id="niceng213er1.appl.et1"><a href="/books/NBK579710/bin/niceng213er1-appl-et1.pdf" class="bk_dwnld_icn bk_dwnld_pdf">Qualitative themes for review question: 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, 1.4M)</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: NBK579710</span><span class="label">PMID: <a href="https://pubmed.ncbi.nlm.nih.gov/35471789" title="PubMed record of this title" ref="pagearea=meta&targetsite=entrez&targetcat=link&targettype=pubmed">35471789</a></span></div></div><div class="small-screen-prev"></div><div class="small-screen-next"></div></article><article data-type="table-wrap" id="figobniceng213er1tab1"><div id="niceng213er1.tab1" class="table"><h3><span class="label">Table 1</span><span class="title">Summary of the protocol (PICO table)</span></h3><p class="large-table-link" style="display:none"><span class="right"><a href="/books/NBK579710/table/niceng213er1.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er1.tab1_lrgtbl__"><table class="no_bottom_margin"><tbody><tr><th id="hd_b_niceng213er1.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><td headers="hd_b_niceng213er1.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></ul>
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</td></tr><tr><th id="hd_b_niceng213er1.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Phenomenon of interest</th><td headers="hd_b_niceng213er1.tab1_1_1_2_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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<p>The views and experiences of disabled children and young people with severe complex needs, their families and carers, using or eligible to use all three services (health, social care and education) on joined-up care between these services for disabled children and young people with severe complex needs.</p>
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<p>Potential themes include:
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<ul><li class="half_rhythm"><div>Shared decision making, person centred care and support, coproduction</div></li><li class="half_rhythm"><div>Transition between services</div></li><li class="half_rhythm"><div>Invisible conditions or disabilities</div></li><li class="half_rhythm"><div>Carers who are themselves disabled</div></li><li class="half_rhythm"><div>Ability to access the right provision for need, and the timeliness of that</div></li><li class="half_rhythm"><div>Number of appointments</div></li><li class="half_rhythm"><div>Tribunals and legal opinions; health care complaints</div></li><li class="half_rhythm"><div>Discrimination or exclusion from integrated services by service providers</div></li><li class="half_rhythm"><div>Out of area placements – residential schools (could be positive or negative)</div></li><li class="half_rhythm"><div>Communication between professionals</div></li><li class="half_rhythm"><div>Usefulness and impact of EHCP on provision</div></li><li class="half_rhythm"><div>Negative experiences of joint working – e.g. navigating a large system (barriers, power imbalances)</div></li><li class="half_rhythm"><div>Looked after children</div></li><li class="half_rhythm"><div>Care coordinator / advocate / key worker</div></li><li class="half_rhythm"><div>Proactive services – empowerment for self-care</div></li><li class="half_rhythm"><div>Reasonable adjustments</div></li><li class="half_rhythm"><div>Medical needs</div></li></ul></p>
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</td></tr><tr><th id="hd_b_niceng213er1.tab1_1_1_3_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Context</th><td headers="hd_b_niceng213er1.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 class="tblwrap-foot"><div><dl class="temp-labeled-list small"><dl class="bkr_refwrap"><dt></dt><dd><div><p class="no_margin">EHCP: education, health and care plans</p></div></dd></dl></dl></div></div></div></article><article data-type="table-wrap" id="figobniceng213er1tab2"><div id="niceng213er1.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/NBK579710/table/niceng213er1.tab2/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er1.tab2_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Study</th><th id="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Population</th><th id="hd_h_niceng213er1.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_niceng213er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:bottom;">Methods</th><th id="hd_h_niceng213er1.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_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref1" rid="niceng213er1.s1.ref1">Adams 2017</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=722</p>
|
|
<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>
|
|
<p>N=12,921</p>
|
|
<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>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<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>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>0 to 25 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er1.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 with free text questions</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>A need for effective communication</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref2" rid="niceng213er1.s1.ref2">Adams 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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="#niceng213er1.s1.ref1" rid="niceng213er1.s1.ref1">Adams 2017</a></p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_3" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Needs or conditions:</b>
|
|
</p>
|
|
<p>EHC plan in place in 2015</p>
|
|
<p>
|
|
<b>Age Range (Mean):</b>
|
|
</p>
|
|
<p>NR</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>A need for effective communication</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref3" rid="niceng213er1.s1.ref3">Boyce 2015</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=26</p>
|
|
<p>Parents of children who are certified as severely sight impaired or sight impaired</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref4" rid="niceng213er1.s1.ref4">Brooks 2013</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.tab2_1_1_1_4" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<b>Setting:</b>
|
|
</p>
|
|
<p>Family home, parents place of work</p>
|
|
<p>
|
|
<b>Data collection:</b>
|
|
</p>
|
|
<p>Semi-structured interviews and focus groups</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref5" rid="niceng213er1.s1.ref5">Children’s Commissioner for Wales 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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 and online questionnaires</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Service provisions for transition need to be improved</div></li><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref6" rid="niceng213er1.s1.ref6">Cohen 2017</a>
|
|
</p>
|
|
<p>Education and Health Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Service provisions for transition need to be improved</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref7" rid="niceng213er1.s1.ref7">Council for Disabled Children 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=6</p>
|
|
<p>Parents of adopted children with disabilities that became apparent during or after adoption</p>
|
|
</td><td headers="hd_h_niceng213er1.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/disorder, 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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Diagnosis as fundamental to accessing the necessary service provisions</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref8" rid="niceng213er1.s1.ref8">Dillenburger 2016</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=14</p>
|
|
<p>Caregivers and parents of individuals with ASD</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Diagnosis as fundamental to accessing the necessary service provisions</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Budgets made a difference to the care received</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>Service provisions for transition need to be improved</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref9" rid="niceng213er1.s1.ref9">Fox 2017</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>A need for effective communication</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref10" rid="niceng213er1.s1.ref10">Griffith 2013</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=10</p>
|
|
<p>Parents</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Diagnosis as fundamental to accessing the necessary service provisions</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref11" rid="niceng213er1.s1.ref11">Hurt 2019</a>
|
|
</p>
|
|
<p>Education and Health Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=7</p>
|
|
<p>Parent of primary school children with ASD</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Diagnosis as fundamental to accessing the necessary service provisions</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref12" rid="niceng213er1.s1.ref12">Hutton 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Budgets made a difference to the care received</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref13" rid="niceng213er1.s1.ref13">Kiernan 2019</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref14" rid="niceng213er1.s1.ref14">Kirk 2014</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Service provisions for transition need to be improved</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref15" rid="niceng213er1.s1.ref15">McConkey 2013</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Short breaks and respite breaks provide benefit</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref16" rid="niceng213er1.s1.ref16">National Autistic Society 2015</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Need for professionals and staff to be trained properly</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref17" rid="niceng213er1.s1.ref17">RIP STARS 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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>
|
|
</td><td headers="hd_h_niceng213er1.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 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>Diagnosis as fundamental to accessing the necessary service provisions</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref18" rid="niceng213er1.s1.ref18">Rodriguez 2014</a>
|
|
</p>
|
|
<p>Unclear what services were involved</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=20</p>
|
|
<p>Parents of children with life limiting conditions</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Short breaks and respite breaks provide benefit</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref19" rid="niceng213er1.s1.ref19">Sales 2018</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=4</p>
|
|
<p>Children and young people (aged 10 to 17)</p>
|
|
<p>N=7</p>
|
|
<p>Parents</p>
|
|
</td><td headers="hd_h_niceng213er1.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> 10-17 years (NR)</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref20" rid="niceng213er1.s1.ref20">Skipp 2016</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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/social/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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Diagnosis as fundamental to accessing the necessary service provisions</div></li><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref21" rid="niceng213er1.s1.ref21">Smith 2014</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>N=31</p>
|
|
<p>Families participating in the new EHC planning pathway that received an EHC plan</p>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>A need for effective communication</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Budgets made a difference to the care received</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Feeling disillusioned/that services do not fully meet the needs of children or young people</div></li><li class="half_rhythm"><div>Service provisions for transition need to be improved</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref22" rid="niceng213er1.s1.ref22">Thom 2015</a>
|
|
</p>
|
|
<p>Education, Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Parents and carers wanted their opinions about the child/young person to be heard</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>Access to information and advice was important</div></li><li class="half_rhythm"><div>The effects of EHC plans on service provisions</div></li><li class="half_rhythm"><div>Budgets made a difference to the care received</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li><li class="half_rhythm"><div>Short breaks and respite breaks provide benefit</div></li></ul>
|
|
</td></tr><tr><td headers="hd_h_niceng213er1.tab2_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<p>
|
|
<a class="bibr" href="#niceng213er1.s1.ref23" rid="niceng213er1.s1.ref23">Young 2018</a>
|
|
</p>
|
|
<p>Health and Social Care Services</p>
|
|
</td><td headers="hd_h_niceng213er1.tab2_1_1_1_2" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<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>
|
|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.tab2_1_1_1_5" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
<ul><li class="half_rhythm"><div>Difficulty in navigating the service system</div></li><li class="half_rhythm"><div>Perceptions about the involvement of the children or young person</div></li><li class="half_rhythm"><div>Short breaks and respite breaks provide benefit</div></li><li class="half_rhythm"><div>Desire to build good relationships with professionals and staff</div></li><li class="half_rhythm"><div>A need for effective communication</div></li><li class="half_rhythm"><div>Service provisions for transition need to be improved</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; YP: young people</p></div></dd></dl></dl></div></div></div></article><article data-type="fig" id="figobniceng213er1fig1"><div id="niceng213er1.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=579710_niceng213er1f1.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/NBK579710/bin/niceng213er1f1.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="figobniceng213er1appjtab1"><div id="niceng213er1.appj.tab1" class="table"><h3><span class="label">Table 18</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/NBK579710/table/niceng213er1.appj.tab1/?report=objectonly" target="object">View in own window</a></span></p><div class="large_tbl" id="__niceng213er1.appj.tab1_lrgtbl__"><table class="no_bottom_margin"><thead><tr><th id="hd_h_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">Study</th><th id="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
|
|
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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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_niceng213er1.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_niceng213er1.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>]
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|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.appj.tab1_1_1_1_1" rowspan="1" colspan="1" style="text-align:left;vertical-align:top;">
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|
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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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
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|
</td><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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 Taylor 2014. Additional themes are included in Taylor 2014.</td></tr><tr><td headers="hd_h_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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_niceng213er1.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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