1
40
14
-
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
March 2017 List
Dublin Core
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Title
A name given to the resource
Outcome Measurement For Children And Young People
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
2017
Creator
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Harding R; Wolfe J; Baker J
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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).
2017
Baker J
Harding R
Journal of Palliative Medicine
March 2017 List
Wolfe J
-
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.jpainsymman.2013.04.010" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2013.04.010</a>
Dublin Core
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Title
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Pediatric Palliative Care in Sub-Saharan Africa: A Systematic Review of the Evidence for Care Models, Interventions, and Outcomes
Publisher
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Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Creator
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Harding R; Albertyn R; Sherr L; Gwyther L
Description
An account of the resource
CONTEXT: The progressive disease burden among children in sub-Saharan Africa means the provision of palliative care is essential and should be provided alongside treatment where it is available. OBJECTIVES: To systematically review the evidence for pediatric palliative care models, interventions, and outcomes to appraise the state of the science and inform best practice. METHODS: A systematic review search strategy was implemented in eight electronic databases, the search results reported using a PRISMA statement, and findings tabulated. RESULTS: In terms of evidence of palliative care provision and outcomes, only five articles were identified. These represent a small range of acute, community, and hospice care and offer some limited guidance on the development and delivery of services. CONCLUSION: Pediatric palliative care is a pressing clinical and public health challenge in sub-Saharan Africa. Explicit evidence-based models of service development, patient assessment, and evidence for control of prevalent problems (physical, psychological, social, spiritual, and developmental) are urgently needed. Greater research activity is urgently required to ensure an evidence-based response to the enormous need for pediatric palliative care in sub-Saharan Africa.
2013-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2013.04.010" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2013.04.010</a>
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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
2013
Albertyn R
Backlog
Gwyther L
Harding R
Journal Article
Journal of Pain and Symptom Management
Sherr L
-
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/bmjspcare-2013-000631" target="_blank" rel="noreferrer">http://doi.org/10.1136/bmjspcare-2013-000631</a>
Dublin Core
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Title
A name given to the resource
The prevalence of life-limiting illness at a Ugandan National Referral Hospital: a 1-day census of all admitted patients
Publisher
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Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
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Jacinto A; Masembe V; Tumwesigye Nazarius Mbona; Harding R
Description
An account of the resource
BACKGROUND: Although models of hospital-based palliative care are common in high-income countries, they are rare in low-income countries despite the high burden of progressive disease. AIM: To measure the proportion of all adult and child patients admitted with previously diagnosed active life-limiting disease, who therefore may be appropriate for palliative care provision, across all beds. DESIGN: One-day 24 h census using chart review across every ward and department. SETTING/PARTICIPANTS: All admitted patients at a large tertiary referral hospital in sub-Saharan Africa. RESULTS: Of 1763 reviewed patients, 663 (37.7%) had a diagnosed active life-limiting disease. Of these, 130 (19.6%) were children. The most prevalent diagnoses were HIV (41.7%), cancer (41.5%) and heart disease (9.2%). During the 24 h census period 19 patients died (population mortality rate 0.01%). CONCLUSIONS: In order to appropriately respond to need, hospital-based palliative care services in low-income settings must be of adequate size to respond to high prevalence of life-limiting illness, and to provide education and support to clinical colleagues managing all patients with life-limiting disease.
2014-11
Identifier
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<a href="http://doi.org/10.1136/bmjspcare-2013-000631" target="_blank" rel="noreferrer">10.1136/bmjspcare-2013-000631</a>
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Type
The nature or genre of the resource
Journal Article
2014
Backlog
BMJ Supportive & Palliative Care
Harding R
Jacinto A
Journal Article
Masembe V
Tumwesigye Nazarius Mbona
-
Dublin Core
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Title
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April 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
April 2019 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2019.25.2.72" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.12968/ijpn.2019.25.2.72</a>
Dublin Core
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Title
A name given to the resource
Advancing the science of outcome measurement in paediatric palliative care
Publisher
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International journal of palliative nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
End-of-life; Outcomes; Paediatrics; Palliative; Measurement
Creator
An entity primarily responsible for making the resource
Harding R; Chambers L; Bluebond-Langner M
Description
An account of the resource
BACKGROUND:: There is a lack of appropriate, validated person-centred outcome measures (PCOM) for paediatric palliative care in the scientific literature, and as a result there is not a tool to drive and evaluate care of children and young people. METHODS:: In line with COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance, an expert group was convened to elicit views on the domains/items to include in a PCOM, implementation challenges and requirements for use in routine care by practitioners. Data were content analysed. RESULTS:: 36 UK-wide clinicians, advocates, and researchers participated. 1) Items included were: specific symptoms, education, play and social interaction, parental time for partner and other children, sex and intimacy, and sibling wellbeing. 2) Implementation challenges: supporting children and young people to engage meaningfully, that the instrument could be seen as a 'test' of parents' care quality, raising unrealistic expectations, proxy validity. 3) There is a need for clear administration and interpretation guidance and for data ownership/access to be agreed. CONCLUSIONS:: This expert meeting addressed the initial step in COSMIN guidance, informing face validity and acceptability. It provides the information necessary for the first phase of tool development and informs potential use and implementation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2019.25.2.72" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2019.25.2.72</a>
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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).
2019
April 2019 List
Bluebond-Langner M
Chambers L
end-of-life
Harding R
International Journal of Palliative Nursing
Measurement
Outcomes
Paediatrics
Palliative
-
Dublin Core
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Title
A name given to the resource
June 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
June 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.330" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpainsymman.2022.02.330</a>
Dublin Core
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Title
A name given to the resource
COVID-19: Impact on Pediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal of Pain and Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Covid-19; Palliative Care; Pediatrics
Creator
An entity primarily responsible for making the resource
Scott HM; Coombes L; Braybrook D; Roach A; Hardardottir D; Bristowe K; Ellis-Smith C; Higginson I; Gao W; Bluebond-Langner M; Farsides B; Murtagh FE; Fraser LK; Harding R
Description
An account of the resource
Context: Children and young people with life-limiting or life-threatening conditions and their families are potentially vulnerable during COVID-19 lockdowns due to pre-existing high clinical support needs and social participation limitations. Objective(s): To explore the impact of the COVID-19 pandemic and lockdowns on this population. Method(s): Sub-analysis of an emergent COVID-19 related theme from a larger semi-structured interview study investigating priority pediatric palliative care outcomes. One hundred and six United Kingdom-wide purposively-sampled Children and young people with life-limiting or life-threatening conditions, parent/carers, siblings, health professionals, and commissioners. Result(s): COVID-19 was raised by participants in 12/44 interviews conducted after the United Kingdom's first confirmed COVID-19 case. Key themes included loss of vital social support, disruption to services important to families, and additional psychological distress. Conclusion(s): Continued delivery of child- and family-centered palliative care requires innovative assessment and delivery of psycho-social support. Disruptions within treatment and care providers may compound support needs, requiring cordination for families facing multiagency delays. Copyright © 2022 American Academy of Hospice and Palliative Medicine
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2022.02.330" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2022.02.330</a>
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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).
2022
April 2022 List
Bluebond-Langner M
Braybrook D
Bristowe K
Coombes L
COVID-19
Ellis-Smith C
Farsides B
Fraser LK
Gao W
Hardardottir D
Harding R
Higginson I
Journal of Pain and Symptom Management
Murtagh FE
Palliative Care
Pediatrics
Roach A
Scott HM
-
Dublin Core
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Title
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September 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
September 2022 List
URL Address
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/02692163221093145</a>
Dublin Core
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Title
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The Impact of COVID-19 on Palliative Care for Children Within the UK
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Palliative care; United Kingdom; COVID-19; Workload; Vulnerability; Conference abstract; Controlled study; Semi-structured interview
Creator
An entity primarily responsible for making the resource
Scott H; Coombes L; Braybrook D; Roach A; Harardottir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Farsides B; Murtagh F; Fraser L; Harding R
Description
An account of the resource
Background/aims: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) represent a group with complex care needs that are met by multiple services and thus may be subject to particular vulnerabilities.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163221093145" target="_blank" rel="noreferrer noopener">10.1177/02692163221093145</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).
2022
Bluebond-Langner M
Braybrook D
Bristowe K
Child
conference abstract
Controlled Study
Coombes L
COVID-19
Ellis-Smith C
Farsides B
Fraser L
Harardottir D
Harding R
Murtagh F
Palliative Care
Palliative Medicine
Roach A
Scott H
Semi-Structured Interview
September 2022 List
United Kingdom
VULNERABILITY
workload
-
Dublin Core
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Title
A name given to the resource
November 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
November 2022 List
URL Address
<a href="http://doi.org/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s00431-022-04566-w</a>
Dublin Core
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Title
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Achieving Child-Centred Care for Children and Young People with Life-Limiting and Life-Threatening Conditions-A Qualitative Interview Study
Publisher
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European Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Family/Psychology; Parents/Psychology; Adolescent; Child; Child Care; Children; End of Life Care; Humans; Normality; Paediatrics; Palliative Care; Qualitative Research; Social Support; Symptom Assessment
Creator
An entity primarily responsible for making the resource
Coombes L; Braybrook D; Roach A; Scott H; Harðardóttir D; Bristowe K; Ellis-Smith C; Bluebond-Langner M; Fraser LK; Downing J; Farsides B; Murtagh FEM; Harding R
Description
An account of the resource
This study aims to identify the symptoms, concerns, and care priorities of children with life-limiting conditions and their families. A semi-structured qualitative interview study was conducted, seeking perspectives from multiple stakeholders on symptoms, other concerns, and care priorities of children and young people with life limiting and life-threatening conditions and their families. Participants were recruited from six hospitals and three children's hospices in the UK. Verbatim transcripts were analysed using framework analysis. A total of 106 participants were recruited: 26 children (5-17 years), 40 parents (of children 0-17 years), 13 siblings (5-17 years), 15 health and social care professionals, 12 commissioners. Participants described many inter-related symptoms, concerns, and care priorities impacting on all aspects of life. Burdensome symptoms included pain and seizures. Participants spoke of the emotional and social impacts of living with life-limiting conditions, such as being able to see friends, and accessing education and psychological support. Spiritual/existential concerns included the meaning of illness and planning for an uncertain future. Data revealed an overarching theme of pursuing 'normality', described as children's desire to undertake usual childhood activities. Parents need support with practical aspects of care to help realise this desire for normality. CONCLUSION: Children with life-limiting conditions and their families experience a wide range of inter-related symptoms, concerns, and care priorities. A holistic, child-centred approach to care is needed, allowing focus on pursuit of normal childhood activities. Improvements in accessibility, co-ordination, and availability of health services are required to achieve this. WHAT IS KNOWN: • Existing evidence regarding symptoms, concerns, and care priorities for children with life-limiting conditions is largely limited to proxy-reported data and those with a cancer diagnosis. • Child-centred care provision must be directed by children's perspectives on their priorities for care. WHAT IS NEW: • Social and educational activities are more important to children with life-limiting conditions than their medical concerns. • A holistic approach to care is required that extends beyond addressing medical needs, in order to support children with life-limiting conditions to focus on pursuit of normal childhood activities.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-022-04566-w" target="_blank" rel="noreferrer noopener">10.1007/s00431-022-04566-w</a>
Rights
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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).
Adolescent
Child
Child Care
End of Life Care
Paediatrics
Palliative Care
Qualitative Research
2022
Bluebond-Langner M
Braybrook D
Bristowe K
Children
Coombes L
Downing J
Ellis-Smith C
European Journal of Pediatrics
Family/psychology
Farsides B
Fraser LK
Harding R
Harðardóttir D
Humans
Murtagh FEM
Normality
November 2022 List
Parents/psychology
Roach A
Scott H
Social Support
Symptom Assessment
-
Dublin Core
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Title
A name given to the resource
2022 Special Edition 4 - Low Resource Setting 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
2022 Special Edition Low Resource Setting Issue
URL Address
<a href="http://doi.org/10.1177/02692163221099583" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163221099583</a>
Dublin Core
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Title
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Face and Content Validity, Acceptability, Feasibility, and Implementability of a Novel Outcome Measure for Children with Life-Limiting or Life-Threatening Illness in Three Sub-Saharan African Countries
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Hospice and Palliative Care Nursing; Palliative Care; Adolescent; Child; Feasibility Studies; Humans; Outcome Assessment Health Care; Palliative Care/px [Psychology]; Surveys and Questionnaires; Uganda
Creator
An entity primarily responsible for making the resource
Namisango E; Bristowe K; Murtagh FE; Downing J; Powell RA; Atieno M; Abas M; Ali Z; Luyirika EB; Meiring M; Mwangi-Powell FN; Higginson IJ; Harding R
Description
An account of the resource
BACKGROUND: The Children's Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. AIM: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. DESIGN: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. RESULTS: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. CONCLUSION: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163221099583" target="_blank" rel="noreferrer noopener">10.1177/02692163221099583</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).
2022
2022 Special Edition Low Resource Setting Issue
Abas M
Adolescent
Ali Z
Atieno M
Bristowe K
Child
Downing J
Feasibility Studies
Harding R
Higginson IJ
Hospice And Palliative Care Nursing
Humans
Luyirika EB
Meiring M
Murtagh FE
Mwangi-Powell FN
Namisango E
Outcome Assessment Health Care
Palliative Care
Palliative Care/px [psychology]
Palliative Medicine
Powell RA
Surveys And Questionnaires
uganda
-
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
2021 Special Edition 1 - Low Resource Settings
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
2021 Special Edition 1 - Low Resource Settings
URL Address
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"> http://doi.org/</a>
Dublin Core
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Title
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What Matters to Children and Families Facing Advanced Cancer? Identification of Priority Outcomes to Improve Paediatric Palliative Care in Turkey and Jordan
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
Low resource setting; oncology
Creator
An entity primarily responsible for making the resource
Boufkhed S; Yurdusen S; Alarjeh G; Ahmed F; Alrjoob W; Sengelen M; Cemaloglu M; Aydin B; Kutluk T; Shamieh O; Harding R
Description
An account of the resource
Background: The global incidence of cancer is increasing, and the Middle East is projected to be one of the most impacted regions. Increasing number of people would benefit from palliative care (PC), but access is poor, especially for children. Individuals with advanced cancer need person-centred PC, yet evidence to date has rarely asked children, young people (CYP) and their families what matters to them. Aim(s): To identify palliative care symptoms and concerns among children, young people and their families facing advanced cancer in Turkey and Jordan. Method(s): Semi-structured in-depth interviews were conducted in a Turkish University Oncology Hospital and a Jordanian Cancer Centre. Purposive sampling was used. We recruited 25 CYP with advanced cancer (age 5-17); 15 parents or caregivers of CYP of any age living with advanced cancer; and 12 multi-professional paediatric PC staff. An interdisciplinary and collaborative approach to thematic analysis using NVivo 12 was conducted concurrently across the three partner sites. Result(s): 104 interviews were conducted in Turkey and Jordan. Preliminary findings highlight that the main concerns of CYP and their families cover the existing WHO dimensions of PC. Pain was the most reported physical symptom, and fear of the pain caused by needles was one of the most important concerns for CYP. Participants reported that psychological needs were the most important for them, despite not being the priority for care teams. The isolation and limitations to conduct enjoyable activities, CYP's 'boredom' during the hospital stay, and fear of infection were among the most reported psychosocial concerns. Staff acknowledged the difficulties in addressing these needs as parents and CYP's needs and expectations were different. Conclusion(s): Our data suggest the importance of understanding the children's psychological concerns and addressing their pain. These data will now form a measurement and quality improvement programme in Turkey and Jordan.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></a>
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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
2021 Special Edition 1 - Low Resource Settings
Ahmed F
Alarjeh G
Alrjoob W
Aydin B
Boufkhed S
Cemaloglu M
Harding R
Kutluk T
Low resource setting
Oncology
Palliative Medicine
Sengelen M
Shamieh O
Yurdusen S
-
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
July 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
July List 2023
URL Address
<a href="http://doi.org/10.1007/s40271-023-00627-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s40271-023-00627-w</a>
Dublin Core
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Title
A name given to the resource
Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members
Publisher
An entity responsible for making the resource available
The Patient
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
communication; family; Patient Participation; preference for care; qualitative; self report; siblings
Creator
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Coombes L; Harðardóttir D; Braybrook D; Roach A; Scott H; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Fraser LK; Murtagh FEM; Harding R
Description
An account of the resource
BACKGROUND: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. OBJECTIVES: The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. METHOD: A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. RESULTS: A total of 79 participants were recruited: 39 children aged 5-17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0-17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. CONCLUSIONS: This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.
Identifier
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<a href="http://doi.org/10.1007/s40271-023-00627-w" target="_blank" rel="noreferrer noopener">10.1007/s40271-023-00627-w</a>
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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
Bluebond-Langner M
Braybrook D
Bristowe K
Communication
Coombes L
Downing J
Ellis-Smith C
Family
Fraser LK
Harding R
Harðardóttir D
July List 2023
Murtagh FEM
Patient Participation
preference for care
Qualitative
Roach A
Scott H
Self Report
Siblings
the patient
-
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
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July 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
July List 2023
URL Address
<a href="http://doi.org/10.1007/s11136-023-03353-w" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1007/s11136-023-03353-w</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
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Patient-centred outcome measure design: the perspectives and preferences of children and young people with life-limiting or life-threatening conditions
Publisher
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Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
outcome assessment; adolescent; child; clinical article; conference abstract; feasibility study; female; genetic transcription; human; interview; male; malignant neoplasm; nervous system; pain; preschool child; recall; self report; voice
Creator
An entity primarily responsible for making the resource
Haroardottir D; Coombes L; Braybrook D; Scott H; Roach A; Bristowe K; Ellis-Smith C; Downing J; Bluebond-Langner M; Laddie J; Hills M; Ramsenthaler C; Fraser LK; Murtagh FEM; Harding R
Description
An account of the resource
Background: Children and young people (CYP) with life-limiting or life-threatening conditions (LLLTC) face specific challenges when self-reporting health outcomes, including communication difficulties and sensitivities around subject matter. No ideal self-reported patientcentred outcome measure (PCOM) currently exists for this population. Practical aspects of design need to be considered in line with CYP's preferences and capabilities to ensure meaningful participation in measurement, and to enable child- and family-centred care. Aim(s): To identify preferences for PCOM response format, recall period, administration mode, and length, among CYP with LLLTC. Method(s): Semi-structured qualitative interviews with CYP aged 5-17 years with LLLTC. CYP were purposively sampled from nine UK sites. Verbatim transcripts were analysed in NVivo using Framework analysis with inductive and deductive coding. Result(s): 26 CYP with a range of LLLTC (primary diagnosis: 10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Response format: many participants reported familiarity with numeric response scales, especially for pain. However, most preferred response formats with pictures, most often emojis. Children under 10 years old in particular preferred emojis, while preferences among older CYP were more variable. Recall period: Participants preferred a short recall, either because they cannot remember far back, or they do not want to think about past ill health. Most felt that they could report health-related outcomes from between the past day up to the past week. Older CYP tended to favour longer recall periods compared to younger children. Administration mode: whilst most participants preferred to complete measures electronically or had no preference, a small number had a strong preference for paper-based measures, suggesting PCOMs should be available in multiple formats. Length: ten or fewer questions were preferred. Conclusion(s): CYP with LLLTC interviewed are accustomed to answering questions about their own health and can communicate preferences to inform PCOM design. Generally, they prefer visually appealing response formats, short measures, and electronic administration. Importantly, respondent burden needs to be considered at the design stage, as demonstrated by preferences for a brief measure and short recall period. The results presented have practical implications for design and development of PCOMs for CYP with LLLTC, whose voices must be included early in measure development to ensure acceptability, feasibility, and enhance valid and reliable self-report.
Identifier
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<a href="http://doi.org/10.1007/s11136-023-03353-w" target="_blank" rel="noreferrer noopener">10.1007/s11136-023-03353-w</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
Bluebond-Langner M
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Coombes L
Downing J
Ellis-Smith C
Feasibility Study
Female
Fraser LK
genetic transcription
Harding R
Haroardottir D
Hills M
Human
Interview
July List 2023
Laddie J
Male
Malignant Neoplasm
Murtagh FEM
Nervous System
outcome assessment
Pain
Preschool Child
Quality of Life Research
Ramsenthaler C
Recall
Roach A
Scott H
Self Report
Voice
-
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 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
September List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231172891</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
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My Life Is a Mess but I Cope': An Analysis of the Language Children with Life-limiting and Life Threatening Illnesses Use to Describe their Own Condition
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; controlled study; female; human; male; preschool child; emotion; clinical article; interview; Only Child; human experiment; human tissue; malignant neoplasm; thematic analysis; conference abstract; health status; literature; language; ambivalence; discourse analysis
Creator
An entity primarily responsible for making the resource
Bristowe K; Braybrook D; Scott HM; Coombes L; Harardottir D; Roach A; Ellis-Smith C; Fraser L; Downing J; Murtagh FE; Harding R
Description
An account of the resource
Background/aims: Children with life-limiting and life-threatening conditions are rarely involved in research. Engaging them directly enables them to express the meaning of their condition in their own words. This study aimed to explore the language children use to describe their condition and its impact on their life, to inform strategies for engaging children about their priorities. <br/>Method(s): Semi-structured, qualitative interviews with purposively sampled children with life-limiting and life-threatening conditions. Data were analysed using thematic analysis, discourse analysis and the discourse dynamics approach to identify figurative language. <br/>Result(s): Participants: 26 children (6 cancer; 20 non-cancer) aged 5-17. <br/>Finding(s): Children as young as five provided rich descriptions of their condition, including: diverse negative emotions often contextualised by what they 'can't do' ('can't do anything', 'can't go anywhere'), and comparisons to healthy ('normal', 'usual') peers, with their condition singling them out ('the one that has something,' 'the sick one'). Others expressed ambivalence ('doesn't bother me', 'not really fussed') or acceptance using idiomatic phrases ('I can live with that', 'you're still you, you haven't gone anywhere'). Metaphor were common, including familiar journey and battle metaphors, and novel usages related to zombies, gaming, superheroes, toys and animals. Children used medical jargon related to their condition, combined with preferred words for their body ('tummy', 'belly', 'butt') and had capacity to create comparatives and superlatives to describe symptom severity (no hurt, hurt a bit, a whole lot, like crazy, really hurt, worse, better). <br/>Conclusion(s): Children make deliberate language choices when describing their condition, and can express holistic needs, and changes in health status. Clinicians should observe and mirror children's language to enhance discussions about priorities.
Identifier
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<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</a>
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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
ambivalence
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Controlled Study
Coombes L
discourse analysis
Downing J
Ellis-Smith C
Emotion
Female
Fraser L
Harardottir D
Harding R
Health Status
Human
Human Experiment
Human Tissue
Interview
Language
literature
Male
Malignant Neoplasm
Murtagh FE
Only Child
Palliative Medicine
Preschool Child
Roach A
Scott HM
September List 2027
Thematic Analysis
-
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
October 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
October List 2023
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-rcpch.517</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
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What constitutes 'good quality care' from the perspectives of children and young people with life-limiting and life-threatening conditions?
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Child; child; female; human; male; outpatient; preschool child; clinical article; Only Child; hospital patient; nervous system; malignant neoplasm; developmental stage; adolescent; conference abstract; semi structured interview; conversation; genetic transcription; social care
Creator
An entity primarily responsible for making the resource
Braybrook D; Coombes L; Scott HM; Haroardottir D; Bristowe K; Fraser L; Harding R
Description
An account of the resource
Objectives Children with life-limiting and life-threatening conditions (LLLTC) have complex needs and are high users of health and social care. Several quality standards exist that highlight the importance of addressing the needs and wishes of children and young people (CYP) with LLLTC in paediatric palliative care. However there is limited evidence about what children themselves think is important. The aim of this study is to consider what constitutes good quality care from the perspectives of CYP with LLLTC. Methods Nine UK inpatient and outpatient settings supported recruitment of CYP aged 5-17 with LLLTC to participate in qualitative semi-structured interviews. Care quality was coded within a larger framework analysis. Analysis of verbatim transcripts was supported by NVivo. Results 26 children and young people with a range of LLLTCs (10 gastrointestinal, 6 cancer, 5 neurological, 3 congenital, 1 metabolic, 1 respiratory) were interviewed. Three domains of quality care were identified: 1) good communication with the health and social care professionals that care for CYP; 2) being enabled to be a CYP during their care; and 3) how professionals can best alleviate their symptoms and concerns. Children and young people spoke about the significance of being cared for attentively, by professionals that they know and who make an effort to know them. They want symptom relief in comfortable settings tailored to their needs and interests. It was important to facilitate activities that are appropriate to their cognitive age. CYP also value being included in conversations about their care in an appropriate way. When health and social care professionals ask CYP about things that are important to them it demonstrates that they care. Conclusion Children and young people with life-limiting and life-threatening conditions have unique and important views about what they want from their care. CYP appreciate professionals making an effort to know them in a way that is appropriate to their developmental stage, and explicit opportunities to be part of communication about their care. Quality care must be informed by CYP views, including those with serious, complex illness. Our study has demonstrated that they can provide useful and specific input. Experiential data on quality of care should be collected alongside outcome data.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/archdischild-2023-rcpch.517" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-rcpch.517</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
Archives of Disease in Childhood
Braybrook D
Bristowe K
Child
Clinical Article
conference abstract
Conversation
Coombes L
developmental stage
Female
Fraser L
genetic transcription
Harding R
Haroardottir D
Hospital Patient
Human
Male
Malignant Neoplasm
Nervous System
October List 2029
Only Child
Outpatient
Preschool Child
Scott HM
Semi Structured Interview
Social 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
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2023 Special Edition 3 - Oncology 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
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1118992</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
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Communication and information sharing with pediatric patients including refugees with advanced cancer, their caregivers, and health care professionals in Jordan: a qualitative study
Publisher
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Frontiers in Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; adult; article; female; human; male; palliative therapy; Information Dissemination; caregiver; health care personnel; human experiment; health care policy; cross-sectional study; adolescent; Jordan; qualitative research; attitude to health; semi structured interview; pediatric patient; Jordanian; implicit bias; advanced cancer/dm [Disease Management]; doctor patient relationship; medical information; refugee; health care practice; myelodysplastic syndrome; myeloproliferative disorder; reticuloendothelial tumor
Creator
An entity primarily responsible for making the resource
Alarjeh G; Boufkhed S; Alrjoub W; Guo P; Yurdusen S; Ahmed F; Abdal-Rahman M; Alajarmeh S; Alnassan A; Al-Awady S; Kutluk T; Harding R; Shamieh O
Description
An account of the resource
Introduction: Effective communication in pediatric palliative cancer care is an important aspect of practice to enhance patient- and family-centered care, and to optimize decision-making. However, little is known about communication preferences practices from the perspectives of children, caregivers and their health care professionals (HCPs) in the Middle Eastern region. Furthermore, involving children in research is crucial but limited. This study aimed to describe the communication and information-sharing preferences and practices of children with advanced cancer, their caregivers, and health care professionals in Jordan. Method(s): A qualitative cross-sectional study was conducted using semi-structured face to face interviews with three groups of stakeholders (children, caregivers and HCPs). Purposive sampling recruited a diverse sample from inpatient and outpatient settings at a tertiary cancer center in Jordan. Procedures were in line with the Consolidated criteria for reporting qualitative research (COREQ) reporting guidelines. Verbatim transcripts were thematically analyzed. Finding(s): Fifty-two stakeholders participated: 43 Jordanian and 9 refugees (25 children, 15 caregivers and 12 HCPs). Four major themes emerged: 1) Hiding information between the three stakeholders which includes parents who hide the information from their sick children and ask the HCPs to do so to protect the child from distressful emotions and children who hide their suffering from their parents to protect them from being sad; 2) Communication and sharing of clinical versus non-clinical information; 3) Preferred communication styles such as use of a companionate approach by acknowledging patients and caregivers' suffering, building a trustful relationship, proactive information sharing, considering child age and medical status, parents as facilitators in communication, and patients' and caregivers' health literacy; 4) Communication and information sharing with refugees where they had dialect issues, which hindered effective communication. Some refugees had unrealistically high expectations regarding their child's care and prognosis, which posed challenges to communication with staff. Discussion(s): The novel findings of this study should inform better child-centered practices and better engage them in their care decisions. This study has demonstrated children's ability to engage in primary research and to express preferences, and parents' ability to share views on this sensitive topic.Copyright © 2023 Alarjeh, Boufkhed, Alrjoub, Guo, Yurdusen, Ahmed, Abdal-Rahman, Alajarmeh, Alnassan, Al-Awady, Kutluk, Harding and Shamieh.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fonc.2023.1118992" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1118992</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
2023 SE3 - Oncology
Abdal-Rahman M
Adolescent
Adult
advanced cancer/dm [Disease Management]
Ahmed F
Al-Awady S
Alajarmeh S
Alarjeh G
Alnassan A
Alrjoub W
Article
Attitude To Health
Boufkhed S
Caregiver
Child
Cross-sectional Study
doctor patient relationship
Female
Frontiers in Oncology
Guo P
Harding R
Health Care Personnel
Health Care Policy
health care practice
Human
Human Experiment
implicit bias
Information Dissemination
Jordan
Jordanian
Kutluk T
Male
Medical Information
myelodysplastic syndrome
myeloproliferative disorder
Palliative Therapy
pediatric patient
Qualitative Research
refugee
reticuloendothelial tumor
Semi Structured Interview
Shamieh O
Yurdusen S