1 40 11 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource January 2025 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November List 2024 URL Address <a href="http://doi.org/10.1093/pch/pxae027" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/pch/pxae027</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource A quality improvement evaluation of a standardized intervention for children with medical complexity transitioning to adult care Publisher An entity responsible for making the resource available Paediatrics and Child Health Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Article; Children with medical complexity; Family physicians; Health care transition; Multiple chronic conditions; Quality improvement; adolescent; adult; assisted ventilation; caregiver; checklist; child psychiatry; chronicity; conversation; decision support system; demographics; dietitian; disability; feedback system; general practitioner; health care access; health care personnel; health care utilization; hospital; human; information processing; major clinical study; medical record review; medical technology; multidisciplinary team; nurse practitioner; patient care; pediatric patient; pediatrician; pediatrics; pharmaceutical care; pharmacist; rehabilitation; school; social worker; standardization; total quality management; transition to adult care; vascular access Creator An entity primarily responsible for making the resource Esser K; Adams S; Chung C; McKay T; Moore C; Wagman H; Lee S; Orkin J Description An account of the resource Children with medical complexity have medical fragility, chronic disease, technology dependence, and high healthcare use. Their transition to adult health care at age 18 involves medical and social elements and follows no standardized process. Our goal was to improve transition readiness in children with medical complexity using a transition intervention within a Complex Care program. All children with medical complexity aged 14 to 18 were included in this quality improvement (QI) project (n = 54). We conducted a pre- and post-intervention chart review to assess transition outcomes and implemented a transition intervention for 6 months, which included an age-stratified checklist, charting template, and transition rounds. Before the intervention, 72% of 17- to 18-year-old patients had documented transition discussions, which increased to 86%. Patients with a family physician increased as well (61% to 73% for 17- to 18-year-olds). Three transition education rounds were held. The intervention increased transition readiness, provided tools to facilitate transition, and created a forum for conversation. © 2024 The Author(s). Published by Oxford University Press on behalf of the Canadian Paediatric Society. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1093/pch/pxae027" target="_blank" rel="noreferrer noopener">10.1093/pch/pxae027</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adams S Adolescent Adult Article assisted ventilation Caregiver Checklist Child Psychiatry Children With Medical Complexity chronicity Chung C Conversation decision support system Demographics dietitian Disability Esser K Family physicians feedback system General Practitioner Health Care Access Health Care Personnel Health care transition Health Care Utilization Hospital Human Information Processing Lee S Major Clinical Study McKay T Medical Record Review Medical Technology Moore C Multidisciplinary team Multiple Chronic Conditions November List 2024 Nurse Practitioner Orkin J Paediatrics And Child Health Patient Care pediatric patient Pediatrician Pediatrics pharmaceutical care pharmacist Quality Improvement Rehabilitation School Social Worker standardization Total Quality Management Transition To Adult Care vascular access Wagman H Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource August 2024 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month August List 2024 URL Address <a href="http://doi.org/10.1002/14651858.CD013329.pub2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/14651858.CD013329.pub2</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Comprehensive care programmes for children with medical complexity Publisher An entity responsible for making the resource available Cochrane Database of Systematic Reviews Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource social determinants of health; Quality of Health Care; quality of life; Program Evaluation; Randomized Controlled Trials as Topic; infant; decision making; Child; Humans; Adolescent; Child Preschool; Chronic Disease; adolescent; Infant; Comprehensive Health Care; epidemiology; caregiver; chronic disease; social worker; hospital admission; Quality of Life; outcome assessment; preschool child; emergency health service; child health care; health care cost; health care personnel; health care quality; health care utilization; children with medical complexity; randomized controlled trial (topic); health care organization; hospital readmission; patient safety; human; child; health care delivery; perception; health care; survival rate; emergency ward; medical care; community care; adverse outcome; multidisciplinary team; therapy; health care need; health insurance; meta analysis; primary health care; life satisfaction; Bias; telemedicine; program evaluation; Review; multiple chronic conditions; functional status; transition to adult care; Controlled Before-After Studies; controlled clinical trial (topic); Interrupted Time Series Analysis; Non-Randomized Controlled Trials as Topic; pulmonary aspiration; remuneration; statistical bias Creator An entity primarily responsible for making the resource Harvey AR; Meehan E; Merrick N; D’Aprano AL; Cox GR; Williams K; Gibb SM; Mountford NJ; Connell TG; Cohen E Description An account of the resource Background: Children with medical complexity (CMC) represent a small, but growing, proportion of all children. Regardless of their underlying diagnosis, by definition, all CMC have similar functional limitations and high healthcare needs. It has been suggested that improving aspects of healthcare delivery for CMC improves health- and quality of life-related outcomes for children and their families and reduces healthcare-related expenditure. As a result, dedicated comprehensive care programmes have been established at many hospitals to meet the needs of CMC; however, it is unclear if such programmes are effective. Objectives: Our main objective was to assess the effectiveness of comprehensive care programmes that aim to improve care coordination and other aspects of health care for CMC and to assess whether the effectiveness of such programmes differs according to the programme setting and structure. We aimed to assess their effectiveness in relation to child and parent health, functioning, and quality of life, quality of care, number of healthcare encounters, unmet healthcare needs, and total healthcare-related costs. Search methods: We searched CENTRAL, MEDLINE, Embase, and CINAHL in May 2023. We also searched reference lists, trial registries, and the grey literature. Selection criteria: Randomised and non-randomised trials, controlled before-after studies, and interrupted time series studies were included. Studies that compared enrolment in a comprehensive care programme with non-enrolment in such a programme/treatment as usual were included. Participants were children that met the criteria for the definition of CMC, which is: having (i) a chronic condition, (ii) functional limitations, (iii) increased health and other service needs, and (iv) increased healthcare costs. Studies that included the following types of outcomes were included: health; quality of care; utilisation, coverage and access; resource use and costs; equity; and adverse outcomes. Data collection and analysis: Two review authors independently extracted data, assessed the risk of bias in each included study, and evaluated the certainty of evidence according to GRADE criteria. Where possible, data were represented in forest plots and pooled. We were unable to undertake a meta-analysis for comparisons and outcomes, so we used a structured synthesis approach. Main results: We included four studies with a total of 912 CMC as participants. All included studies were randomised controlled trials conducted in hospitals in the USA or Canada. Participants varied across the included studies; however, all four studies included children with complex and chronic illness and high healthcare needs. While the primary aim of the intervention was similar across all four studies, the components of the interventions differed: in the four studies, the intervention involved some element of care coordination; in two of the studies, it involved the child receiving care from a multidisciplinary team, while in one study, the intervention was primarily centred on access to an advanced practice nurse care coordinator and another study involved nurse a practitioner-paediatrician dyad partnering with families. The risk of bias in the four studies varied across domains, with issues primarily relating to the lack of blinding of participants, personnel, and outcome assessors, inadequate allocation concealment, and incomplete outcome data. Comprehensive care for CMC compared to usual care may make little to no difference to child health, functioning, and quality of life at 12 or 24 months (three studies with 404 participants) and we assessed the evidence for the outcomes in this category (child health-related quality of life and functional status) as being of low certainty. For CMC, comprehensive care probably makes little or no difference to parent health, functioning, and quality of life compared to usual care at 12 months (one study with 117 participants) and we assessed the evidence for this outcome as being of moderate certainty. Comprehensive care for CMC compared to usual are may slightly improve child and family satisfaction with, and perceptions of, care and service delivery at 12 months (three studies with 453 participants); however, we assessed the evidence for these outcomes as being of low certainty. For CMC, comprehensive care probably makes little or no difference to the number of healthcare encounters (emergency department visits) and the number of hospitalised days (hospital admissions) compared to usual care at 12 months (three studies with 668 participants), and we assessed the evidence for these outcomes as being of moderate certainty. Three of the included studies (668 participants) reported cost outcomes and had conflicting results, with one study reporting significantly lower healthcare costs at 12 months in the intervention group compared to the control group, one reporting no differences between groups, and the other study reporting a greater increase in total healthcare costs in the intervention group compared to the control group. Overall, comprehensive care may make little or no difference to overall healthcare costs in CMC; however, the methods used to measure total healthcare costs varied across studies and the certainty of the evidence relating to this outcome is low. No studies assessed the costs to the family. Authors' conclusions: The findings of this review should be treated with caution due to the limited amount and quality of the published research that was available to be included. Overall, the certainty of the evidence for the effectiveness of comprehensive care for CMC ranged from low to moderate across outcomes and there is currently insufficient evidence on which to draw strong conclusions. There is a need for more high-quality randomised trials with consistency of the target population and intervention components, methods of reporting outcomes, and follow-up periods, as well as full cost analyses, taking into account both costs to the family and costs to the healthcare system. Copyright © 2024 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/14651858.CD013329.pub2" target="_blank" rel="noreferrer noopener">10.1002/14651858.CD013329.pub2</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2024 Adolescent adverse outcome August List 2024 Bias Caregiver Child Child Health Care Child Preschool Children With Medical Complexity Chronic Disease Cochrane Database of Systematic Reviews Cohen E community care Comprehensive Health Care Connell TG Controlled Before-After Studies controlled clinical trial (topic) Cox GR D’Aprano AL Decision Making Emergency Health Service Emergency Ward Epidemiology Functional Status Gibb SM Harvey AR Health Care Health Care Cost Health Care Delivery health care need health care organization Health Care Personnel Health Care Quality Health Care Utilization health Insurance Hospital Admission hospital readmission Human Humans Infant Interrupted Time Series Analysis life satisfaction Medical Care Meehan E Merrick N meta analysis Mountford NJ Multidisciplinary team Multiple Chronic Conditions Non-Randomized Controlled Trials as Topic outcome assessment Patient Safety Perception Preschool Child Primary Health Care Program Evaluation pulmonary aspiration Quality Of Health Care Quality Of Life Randomized Controlled Trial (topic) Randomized Controlled Trials as Topic remuneration Review social determinants of health Social Worker statistical bias Survival Rate Telemedicine Therapy Transition To Adult Care Williams K Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource November 2023 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month November List 2023 URL Address <a href="http://doi.org/10.1177/13674935231202870" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/13674935231202870</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Transitioning from paediatric to adult healthcare: Exploring the practices and experiences of care providers Publisher An entity responsible for making the resource available Journal of Child Health Care Date A point or period of time associated with an event in the lifecycle of the resource 2023 Subject The topic of the resource paediatrics; adolescent; Chronic illness; transition to adult care; health personnel Creator An entity primarily responsible for making the resource Splane J; Doucet S; Luke A Description An account of the resource Complex paediatric health conditions are increasingly associated with survival into adulthood resulting in more youth with complex care needs (CCN) transitioning from paediatric to adult healthcare. Current transition practices, when present, are disorganized, resulting in health status deterioration and complications due to unmet needs. The aim of this qualitative descriptive study is to develop a broader understanding of the current transition practices and experiences, as well as recommendations of care providers who support youth with CCN in the transition from paediatric to adult healthcare. Fifteen care providers from two Eastern Canadian provinces were interviewed using a semi-structured interview guide. The data collected were analyzed using inductive thematic analysis following the six phases outlined by Braun and Clarke (2006). The findings from this research demonstrate (1) a shortage of care providers, (2) inconsistent timing for transition initiation, and (3) lack of available community resources and services. Participant recommendations include (1) a designated transition coordinator; (2) transition policy implementation; (3) improved collaboration between and across care teams; and (4) the integration of virtual care to facilitate the transition process. The results of this study can potentially improve transition practices and policies and guide future research in this area. © The Author(s) 2023. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/13674935231202870" target="_blank" rel="noreferrer noopener">10.1177/13674935231202870</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Adolescent Chronic Illness Doucet S Health Personnel Journal Of Child Health Care Luke A November List 2025 Paediatrics Splane J Transition To Adult Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2022 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February 2022 List URL Address <a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1038/s41390-021-01396-8</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review Publisher An entity responsible for making the resource available Pediatric Research Date A point or period of time associated with an event in the lifecycle of the resource 1120 Subject The topic of the resource child; life-limiting condition; systematic review; Transition to adult care Creator An entity primarily responsible for making the resource Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK Description An account of the resource Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 1120 Child February 2022 List Flemming K Fraser LK Jarvis SW Life-limiting Condition Pediatric Research Richardson G Roberts D Systematic Review Transition To Adult Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource January 2022 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month January 2022 List URL Address <a href="http://doi.org/10.1136/bmjopen-2021-055194" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1136/bmjopen-2021-055194</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Quality indicators for transition from paediatric to adult care for adolescents with chronic physical and mental illness: protocol for a systematic review Publisher An entity responsible for making the resource available BMJ open Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource quality indicators; Transition to adult care; paediatrics; quality in health care; health services administration & management Creator An entity primarily responsible for making the resource Bailey K; Lee S; de Los Reyes T; Lo L; Gorter JW; Toulany A Description An account of the resource INTRODUCTION: Transition from paediatric to adult care is a complex process, which poses significant challenges for adolescents with chronic physical and mental illnesses. For many, transfer to adult care is associated with poor health and psychosocial outcomes. Quality indicators to evaluate transition to adult care are needed to benchmark and compare performance across conditions and health systems. This systematic review aims to identify quality indicators for successful transition to adult care which can be applied across chronic physical and/or mental illnesses. METHODS: Published literature will be searched using MEDLINE, Embase and CINHAL from earliest available date to July 2021. Grey literature will be searched using the Grey Matters tool. Using a set of inclusion/exclusion criteria, two independent reviewers will screen titles and abstracts, followed by full-text review. Disagreements will be resolved by a third reviewer. Study selection and data extraction will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols. Study appraisal will be completed using the Appraisal of Guidelines for Research and Evaluation for Quality Indicators instrument. Extracted quality indicators will be categorised into a conceptual framework. ETHICS AND DISSEMINATION: Results from this review will offer novel insights into quality indicators that may be used to measure and evaluate transition success across conditions, which will be disseminated via a Canadian transition collaborative, workshops and peer-reviewed publication. Extracted quality indicators will be further prioritised in a Delphi study with patients, caregivers and providers. This is a critical step in developing a core set of metrics to evaluate transitions to adult care. Ethics approval is not required as this review will identify and synthesise findings from published literature. PROSPERO REGISTRATION NUMBER: CRD42020198030. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmjopen-2021-055194" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-055194</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2021 Bailey K Bmj Open de Los Reyes T Gorter JW Health services administration & management January 2022 List Lee S Lo L Paediatrics Quality In Health Care Quality Indicators Toulany A Transition To Adult Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource May 2021 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month May 2021 List URL Address <a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1038/s41390-021-01396-8</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Transition of children with life-limiting conditions to adult care and healthcare use: a systematic review Publisher An entity responsible for making the resource available Pediatric Research. Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource children; health care utilization; life-limiting conditions; Transition to adult care Creator An entity primarily responsible for making the resource Jarvis SW; Roberts D; Flemming K; Richardson G; Fraser LK Description An account of the resource Background: Improved survival has led to increasing numbers of children with life-limiting conditions transitioning to adult healthcare services. There are concerns that transition may lead to a reduction in care quality and increases in emergency care. This review explores evidence for differences in health or social care use post- versus pre-transition to adult services. Method(s): MEDLINE, EMBASE, CINAHL, PsychINFO and Social Science Citation Index were searched. Studies published in English since 1990 including individuals with any life-limiting condition post- and pre-transition and reporting a health or social care use outcome were included. Data were extracted and quality assessed by one reviewer with 30% checked by an independent reviewer. Result(s): Nineteen papers (18 studies) met the inclusion criteria. There was evidence for both increases and decreases (post- versus pre-transition) in outpatient attendance, inpatient admissions, inpatient bed days and health service costs; for increases in Emergency Department visits and for decreases in individuals receiving physiotherapy. Conclusion(s): Evidence for changes in healthcare use post- versus pre-transition is mixed and conflicting, although there is evidence for an increase in Emergency Department visits and a reduction in access to physiotherapy. More high-quality research is needed to better link changes in care to the transition. Impact: Evidence for changes in healthcare use associated with transition to adult services is conflicting.Emergency Department visits increase and access to physiotherapy decreases at transition.There are marked differences between care patterns in the United States and Canada. Copyright © 2021, The Author(s). Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1038/s41390-021-01396-8" target="_blank" rel="noreferrer noopener">10.1038/s41390-021-01396-8</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2021 Children Flemming K Fraser LK Health Care Utilization Jarvis SW Life-limiting Conditions May 2021 List Pediatric Research. Richardson G Roberts D Transition To Adult Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource February 2019 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month February 2019 List URL Address <a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1111/jan.13811</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Conflicting realities experienced by children with life-limiting and life-threatening conditions when transitioning to adult health services Publisher An entity responsible for making the resource available Journal of advanced nursing Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource social support; qualitative analysis; palliative therapy; major clinical study; sibling; non profit organization; skill; joint; human; article; child; female; male; controlled study; adult; interview; total quality management; transition to adult care; learning; social media; adult child; secondary analysis; dilution; facilitation; social isolation Creator An entity primarily responsible for making the resource Noyes J; Pritchard S; Pritchard A; Bennett V; Rees S Description An account of the resource AIMS: The aim of this study was to report a secondary qualitative analysis exploring the cultural and practical differences that young people and parents experience when transitioning from children's to adult services. BACKGROUND: Despite two decades of research and quality improvement initiatives, young people with life-limiting and life-threatening conditions still find transition unsatisfactory. DESIGN: Secondary analysis: 77 qualitative interviews with children and young people (20), parents (35), siblings (1), professionals (21). Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/jan.13811" target="_blank" rel="noreferrer noopener">10.1111/jan.13811</a> 2018 Adult Adult Child Article Bennett V Child Controlled Study dilution facilitation February 2019 List Female Human Interview joint Journal Of Advanced Nursing Learning Major Clinical Study Male Non Profit Organization Noyes J Palliative Therapy Pritchard A Pritchard S Qualitative Analysis Rees S Secondary Analysis Sibling Skill Social Isolation social media Social Support Total Quality Management Transition To Adult Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource December 2018 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month December 2018 List URL Address <a href="http://doi.org/10.1016/j.ijnurstu.2018.06.015" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.1016/j.ijnurstu.2018.06.015</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Facilitating transition from children's to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a mixed methods realist evaluation Publisher An entity responsible for making the resource available International journal of nursing studies Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource decision making; staff training; palliative therapy; human experiment; skill; childhood; human; article; child; female; male; adult; interview; clinical article; young adult; theoretical study; transition to adult care; drawing Creator An entity primarily responsible for making the resource Kerr H; Price J; Nicholl H; O'Halloran P Description An account of the resource DESIGN: A realist evaluation using mixed methods with four phases of data collection in the island of Ireland. Phase one: a questionnaire survey of statutory and non-statutory organisations providing health, social and educational services to young adults making the transition from children's to adult services in Northern Ireland and one Health Services Executive area in the Republic of Ireland. Phase two: interviews with eight young adults. Phase three: two focus groups with a total of ten parents/carers. Phase four: interviews with 17 service providers. Data were analysed seeking to explain the impact of services and interventions, and to identify organisational and human factors thought to influence the quality, safety and continuity of care. RESULTS: Eight interventions were identified as facilitating transition from children's to adult services. The inter-relationships between these interventions supported two complementary models for successful transition. One focused on fostering a sense of confidence among adult service providers to manage the complex care of the young adult, and empowering providers to make the necessary preparations in terms of facilities and staff training. The other focused on the young adults, with service providers collaborating to develop an autonomous young adult, whilst actively involving parents/carers. These models interact in that a knowledgeable, confident young adult who is growing in decision-making abilities is best placed to take advantage of services - but only if those services are properly resourced and run by staff with appropriate skills. No single intervention or stakeholder group can guarantee a successful transition. Rather, service providers could work with young adults and their parents/carers to consider desired outcomes, and the range of interventions, in light of the organisational and human resources available in their context. This would allow them to supplement the organisational context where necessary and select interventions that are more likely to deliver outcomes in that context. BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, necessitating a transition from children's to adult services. Given the lack of evidence on interventions to promote transition, it is important that those creating and evaluating interventions develop a theoretical understanding of how such complex interventions may work. OBJECTIVES: To develop theory about the interventions, and organisational and human factors that help or hinder a successful transition from children's to adult services, drawing on the experience, knowledge, and insights of young adults with life-limiting conditions, their parents/carers, and service providers. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.ijnurstu.2018.06.015" target="_blank" rel="noreferrer noopener">10.1016/j.ijnurstu.2018.06.015</a> 2018 Adult Article Child childhood Clinical Article December 2018 List Decision Making Drawing Female Human Human Experiment International Journal Of Nursing Studies Interview Kerr H Male Nicholl H O'Halloran P Palliative Therapy Price J Skill staff training theoretical study Transition To Adult Care Young Adult Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource September 2018 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month October 2018 List URL Address <a href="http://doi.org/10.1016/j.ijnurstu.2017.06.013" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ijnurstu.2017.06.013</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Transition from children's to adult services for young adults with life-limiting conditions: A realist review of the literature Publisher An entity responsible for making the resource available International Journal of Nursing Studies Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Terminally Ill; Transition to Adult Care; Adolescent; Adult; Child; Humans; Young Adult Creator An entity primarily responsible for making the resource Kerr H; Price J; Nicholl H; O'Halloran P Description An account of the resource BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, which means they must make the transition from children's to adult services. This has proved a challenging process for both young adults and service providers, with complex transition interventions interacting in unpredictable ways with local contexts. OBJECTIVES: To explain how intervention processes interact with contextual factors to help transition from children's to adult services for young adults with life-limiting conditions. DESIGN: Systematic realist review of the literature. DATA SOURCES: Literature was sourced from four electronic databases: Embase, MEDLINE, Science Direct and Cochrane Library from January 1995 to April 2016. This was supplemented with a search in Google Scholar and articles sourced from reference lists of included papers. REVIEW METHODS: Data were extracted using an adapted standardised data extraction tool which included identifying information related to interventions, mechanisms, contextual influences and outcomes. Two reviewers assessed the relevance of papers based on the inclusion criteria. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme tools. RESULTS: 78 articles were included in the review. Six interventions were identified related to an effective transition to adult services. Contextual factors include the need for children's service providers to collaborate with adult service providers to prepare an environment with knowledgeable staff and adequate resources. Mechanisms triggered by the interventions include a sense of empowerment and agency amongst all stakeholders. CONCLUSIONS: Early planning, collaboration between children's and adult service providers, and a focus on increasing the young adults' confidence in decision-making and engaging with adult services, are vital to a successful transition. Interventions should be tailored to their context and focused not only on organisational procedures but on equipping young adults, parents/carers and staff to engage with each other effectively. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.ijnurstu.2017.06.013" target="_blank" rel="noreferrer noopener">10.1016/j.ijnurstu.2017.06.013</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. 2017 Adolescent Adult Child Humans International Journal Of Nursing Studies Kerr H Nicholl H O'Halloran P October 2018 List Price J September 2018 List Terminally Ill Transition To Adult Care Young Adult Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.7748/ncyp.26.6.13.s15" target="_blank" rel="noreferrer">http://doi.org/10.7748/ncyp.26.6.13.s15</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Transition to adult services for young people with-limiting conditions. Publisher An entity responsible for making the resource available Nursing Children And Young People Date A point or period of time associated with an event in the lifecycle of the resource 2014 Subject The topic of the resource Female; Humans; Male; Palliative Care; hospice care; Adolescent Health Services; Transition to Adult Care Description An account of the resource Transition to adult services for young people with life-limiting conditions. 2014-07 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.7748/ncyp.26.6.13.s15" target="_blank" rel="noreferrer">10.7748/ncyp.26.6.13.s15</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2014 Adolescent Health Services Backlog Female Hospice Care Humans Journal Article Male Nursing Children and Young People Palliative Care Transition To Adult Care Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month June 2016 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Helping Families Cope With The Severe Stress Of Dravet Syndrome. Publisher An entity responsible for making the resource available Canadian Journal Of Neurological Sciences Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Epilepsies; Myoclonic/nursing; Epilepsies Myoclonic/physiopathology; Epilepsies Myoclonic/psychology; Family; Family Health; Female; Humans; Male; Stress Psychological/etiology; Transition To Adult Care Dravet Syndrome; Family; Help; Management; Support Creator An entity primarily responsible for making the resource Camfield P; Camfield C; Nolan K Description An account of the resource Abstract A child with Dravet syndrome shakes family life to the core. Dravet syndrome usually has three phases: (1) up to 1-1½ years: with episodes of febrile status epilepticus but normal development; (2) age 1½ to ~6-10 years: with frequent seizures of varying types, developmental stagnation, behavioural and sleep problems; (3) after ~10 years: improvement in seizures, deteriorating gait, intellectual disability but some developmental gains. Complete seizure control is rare-simply prescribing medication is inadequate to help families. Based on structured interviews with 24 families and confirmed by more informal discussions with other families, we suggest strategies for coping with this catastrophe. A child with Dravet syndrome usually means that one parent cannot work-financial pressures should be anticipated. In Stage 1, the approach to status should include a written protocol. An indwelling catheter for rapid venous access may be helpful. In Stage 2, assistance finding qualified babysitters is required, and the extended family needs encouragement to help. Appropriate equipment, rescue medication and protocols should travel with the child. Siblings may benefit from a system of one parent "on call." An internet support group provides an invaluable lifeline. In Stage 3, family isolation may be extreme-respite care and personal time for parents are important. Death from status, accidents and SUDEP (sudden unexplained death in epilepsy) occurs in 15%. Fear of SUDEP needs to be addressed. Moving from paediatric to adult care is frightening; an epilepsy transition clinic is useful. Attention to these realities may improve the quality of life for both child and family. Identifier An unambiguous reference to the resource within a given context DOI: 10.1017/cjn.2016.248 Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2016 Camfield C Camfield P Canadian Journal of Neurological Sciences Dravet Syndrome Epilepsies Epilepsies Myoclonic/physiopathology Epilepsies Myoclonic/psychology Family Family Health Female Help Humans June 2016 List Male Management Myoclonic/nursing Nolan K Stress Psychological/etiology Support Transition To Adult Care