1 40 7 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 June 2018 List 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). 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 2018 List URL Address <a href="http://doi.org/10.4997/JRCPE.2016.402" target="_blank" rel="noreferrer noopener">http://doi.org/10.4997/JRCPE.2016.402</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 Challenges and 'obstacles': reframing our perspective on the transition into adulthood for young people with life-limiting and life-threatening conditions Publisher An entity responsible for making the resource available Journal of the Royal College of Physicians of Edinburgh Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Patient Transfer; Acute Disease; Adolescent; Humans; Young Adult Creator An entity primarily responsible for making the resource Pritchard AW; Rees SA Description An account of the resource BACKGROUND: The number of children worldwide requiring palliative care services is increasing due to advances in medical care and technology. The use of outcome measures is important to improve the quality and effectiveness of care. AIM: To systematically identify health-related quality-of-life outcome measures that could be used in paediatric palliative care and examine their feasibility of use and psychometric properties. DESIGN: A systematic literature review and analysis of psychometric properties. DATA SOURCES: PsychInfo, Medline and EMBASE were searched from 1 January 1990 to 10 December 2014. Hand searches of the reference list of included studies and relevant reviews were also performed. RESULTS: From 3460 articles, 125 papers were selected for full-text assessment. A total of 41 articles met the eligibility criteria and examined the psychometric properties of 22 health-related quality-of-life measures. Evidence was limited as at least half of the information on psychometric properties per instrument was missing. Measurement error was not analysed in any of the included articles and responsiveness was only analysed in one study. The methodological quality of included studies varied greatly. CONCLUSION: There is currently no 'ideal' outcome assessment measure for use in paediatric palliative care. The domains of generic health-related quality-of-life measures are not relevant to all children receiving palliative care and some domains within disease-specific measures are only relevant for that specific population. Potential solutions include adapting an existing measure or developing more individualized patient-centred outcome and experience measures. Either way, it is important to continue work on outcome measurement in this field. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.4997/JRCPE.2016.402" target="_blank" rel="noreferrer noopener">10.4997/JRCPE.2016.402</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). 2016 Acute Disease Adolescent Humans Journal of the Royal College of Physicians of Edinburgh June 2018 List Patient Transfer Pritchard AW Rees SA 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/10.1136/bmj.330.7493.721" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmj.330.7493.721</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 Chronic illness and disability Publisher An entity responsible for making the resource available Bmj (clinical Research Ed.) Date A point or period of time associated with an event in the lifecycle of the resource 2005 Subject The topic of the resource Humans; Emotions; Mental Health; Family Health; Primary Health Care; Patient Compliance; adolescent; Adolescent Transitions; Patient Transfer; Educational Status; Chronic Disease/psychology/therapy; Disabled Persons/psychology Creator An entity primarily responsible for making the resource Yeo M; Sawyer S Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmj.330.7493.721" target="_blank" rel="noreferrer">10.1136/bmj.330.7493.721</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 Description An account of the resource 2005 2005 Adolescent Adolescent Transitions Backlog Bmj (clinical Research Ed.) Chronic Disease/psychology/therapy Disabled Persons/psychology Educational Status Emotions Family Health Humans Journal Article Mental Health Patient Compliance Patient Transfer Primary Health Care Sawyer S Yeo M 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/10.1002/ppul.10419" target="_blank" rel="noreferrer">http://doi.org/10.1002/ppul.10419</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 programs in cystic fibrosis centers Publisher An entity responsible for making the resource available Pediatric Pulmonology Date A point or period of time associated with an event in the lifecycle of the resource 2004 Subject The topic of the resource Humans; Great Britain; Adult; Continuity of Patient Care; adolescent; Adolescent Transitions; Cystic Fibrosis/therapy; Patient Transfer Creator An entity primarily responsible for making the resource Conway SP Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/ppul.10419" target="_blank" rel="noreferrer">10.1002/ppul.10419</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 Description An account of the resource 2004 2004 Adolescent Adolescent Transitions Adult Backlog Continuity Of Patient Care Conway SP Cystic Fibrosis/therapy Great Britain Humans Journal Article Patient Transfer Pediatric Pulmonology 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/10.1016/j.iccn.2004.05.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.iccn.2004.05.008</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 Reducing family members' anxiety and uncertainty in illness around transfer from intensive care: an intervention study Publisher An entity responsible for making the resource available Intensive and Critical Care Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2004 Subject The topic of the resource Female; Humans; Male; Intensive Care Units; Adult; Aged; Middle Aged; Australia; Analysis of Variance; adolescent; 80 and over; Family/psychology; ICU Decision Making; social support; Intervention; Interventions; Patient Transfer; Anxiety/prevention & control; Pamphlets Creator An entity primarily responsible for making the resource Mitchell ML; Courtney M Description An account of the resource INTRODUCTION: This intervention study examines anxiety and uncertainty in illness in families transferring from intensive care to a general ward. METHODS: The pre-test, post-test design purposively allocated family members to a control (n = 80) and intervention group (n = 82). The intervention group experienced a structured individualised transfer method whereas the control group received existing ad hoc transfer methods. Families were surveyed before and after transfer. RESULTS: Families' uncertainty was significantly related to their state anxiety (P < 0.000), the relationship to the patient (P = 0.022), and the unexpected nature of patients' admission (P < 0.000). Anxiety increased significantly with reduced social support (P = 0.002). Following transfer, anxiety reduced significantly for both groups whereas uncertainty reduced significantly for the intervention group (P = 0.03). CONCLUSION: Families at the time of transfer experience uncertainty and anxiety, which are significantly related in this study. The intervention significantly reduced uncertainty scores. When the family member was a parent, when admissions were unexpected, and those with fewer social supports represent potential 'at risk' groups whose adaptation to transfer may limit their coping ability. The structured individualised method of transfer is recommended with further research of ICU families to further examine the dimension of uncertainty and how it affects patient outcomes. 2004 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.iccn.2004.05.008" target="_blank" rel="noreferrer">10.1016/j.iccn.2004.05.008</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 2004 80 And Over Adolescent Adult Aged Analysis of Variance Anxiety/prevention & control Australia Backlog Courtney M Family/psychology Female Humans ICU Decision Making Intensive and Critical Care Nursing Intensive Care Units Intervention Interventions Journal Article Male Middle Aged Mitchell ML Pamphlets Patient Transfer Social Support 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/10.1046/j.1442-2018.2003.00155.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1442-2018.2003.00155.x</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 Understanding uncertainty and minimizing families' anxiety at the time of transfer from intensive care Publisher An entity responsible for making the resource available Nursing & Health Sciences Date A point or period of time associated with an event in the lifecycle of the resource 2003 Subject The topic of the resource Humans; Intensive Care Units; Emotions; Questionnaires; Professional-Family Relations; Communication; Anxiety; Uncertainty; Family/psychology; ICU Decision Making; Patient Transfer; Critical Illness/psychology; Intensive Care/psychology; Stress (Psychology) Creator An entity primarily responsible for making the resource Mitchell ML; Courtney M; Coyer F Description An account of the resource When general ward registered nurses (RN) receive patients from an intensive care unit (ICU) they report that much of their time in the initial phases revolves around meeting family needs (Farvis, 2002). Families experience anxiety when leaving the security of the close monitoring seen in ICU (Leith, 1999) and their anxiety reduces their ability to play a key role in the patient's recovery (McShane, 1991; Leske, 1992) as it can impair their decision-making (Cagan, 1988; Halm et al., 1993). By reducing a family's anxiety, they may be more able to cope with the necessary transition to a general ward and support the patient's recovery. A literature search from 1990 onwards was performed within the CINAHL, Medline and Cochrane databases using the key words: intensive care, family, General System Theory, uncertainty, anxiety and transfer. Further articles were retrieved from citation references from the Web of Science or through the reference lists of retrieved literature. Library catalogues were searched using the same key words for books and book chapters. von Bertalanffy's General System Theory provides a framework for understanding the importance of family in a critical illness situation. Critical illness permits little or no time to adapt, thus reducing the family's ability to cope with the situation. Transfer out of ICU is a significant anxiety-producing event for families. Uncertainty in illness is reported in other illness situations to reduce family's adaptation to illness events, but has not been researched with an ICU cohort of families. Seven out of the top 10 needs of ICU families are information needs, highlighting the importance of communication regarding progress and future plans. Nurses require an increased awareness that transfer anxiety exists for families and to be knowledgeable about ways to reduce its occurrence. Research is required to evaluate the efficacy of interventions to reduce anxiety for families and examine the level of uncertainty in illness in this cohort. 2003 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1046/j.1442-2018.2003.00155.x" target="_blank" rel="noreferrer">10.1046/j.1442-2018.2003.00155.x</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 2003 anxiety Backlog Communication Courtney M Coyer F Critical Illness/psychology Emotions Family/psychology Humans ICU Decision Making Intensive Care Units Intensive Care/psychology Journal Article Mitchell ML Nursing & Health Sciences Patient Transfer Professional-family Relations Questionnaires Stress (Psychology) Uncertainty 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/10.1177/1367493504041868" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493504041868</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 Improving transition: a qualitative study examining the attitudes of young people with chronic illness transferring to adult care 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 2004 Subject The topic of the resource Female; Humans; Male; Adolescent Psychology; Great Britain; Adult; Attitude to Health; Interviews as Topic; Age Factors; Qualitative Research; Continuity of Patient Care; Professional-Patient Relations; adolescent; Adolescent Transitions; social support; Patient Transfer; Adolescent Health Services/organization & administration; Chronic Disease/psychology/therapy Creator An entity primarily responsible for making the resource Soanes C; Timmons S Description An account of the resource Transition is a process that attends to the medical, psychosocial and educational needs of young people as they transfer to adult-orientated care. With a growing population of adolescents surviving with chronic illness well into adulthood, it is remarkable that empirical research has paid little attention to transition. This qualitative study examined the attitudes of young people with chronic illness who were facing transition, considering what young people wanted from a transition service and the ways in which provision could be improved from a service-user's perspective. A purposive sample of seven adolescents (aged 14-17) attending a hospital youth club were interviewed. To increase the likelihood of successful transition, strategies need to be informal, flexible, highly individualized and prepare adolescents steadily for adult services. 2004 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/1367493504041868" target="_blank" rel="noreferrer">10.1177/1367493504041868</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 2004 Adolescent Adolescent Health Services/organization & administration Adolescent Psychology Adolescent Transitions Adult Age Factors Attitude To Health Backlog Chronic Disease/psychology/therapy Continuity Of Patient Care Female Great Britain Humans Interviews As Topic Journal Article Journal Of Child Health Care Male Patient Transfer Professional-patient Relations Qualitative Research Soanes C Social Support Timmons S 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/10.1089/109662101753381692" target="_blank" rel="noreferrer">http://doi.org/10.1089/109662101753381692</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 Pediatric extubation: "pulling the tube" Publisher An entity responsible for making the resource available Journal Of Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2001 Subject The topic of the resource Humans; infant; Intensive Care Units; Euthanasia; Patient Care Planning; Neonatal; decision making; Newborn; hospice care; Patient Transfer; Intratracheal; Intubation; Passive; Pediatrics/standards Creator An entity primarily responsible for making the resource Sine D; Sumner L; Gracy D; von Gunten CF Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/109662101753381692" target="_blank" rel="noreferrer">10.1089/109662101753381692</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 Description An account of the resource 2001 2001 Backlog Decision Making Euthanasia Gracy D Hospice Care Humans Infant Intensive Care Units Intratracheal Intubation Journal Article Journal of Palliative Medicine Neonatal Newborn Passive Patient Care Planning Patient Transfer Pediatrics/standards Sine D Sumner L von Gunten CF