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40
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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 2 - Oncology
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 - Oncology
URL Address
<a href="http://doi.org/10.1136/bmjopen-2020-045226" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2020-045226</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
MyPal-Child Study Protocol: An Observational Prospective Clinical Feasibility Study of the MyPal ePRO-Based Early Palliative Care Digital System in Paediatric Oncology Patients
Publisher
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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
paediatric oncology; paediatric palliative care; health informatics
Creator
An entity primarily responsible for making the resource
Meyerheim M; Karamanidou C; Payne S; Garani-Papadatos T; Sander A; Downing J; Stamatopoulos K; Ling J; Payne C; Scarfò L; Lokaj P; Maramis C; Graf N
Description
An account of the resource
INTRODUCTION: Electronic patient-reported outcomes (ePROs) have tremendous potential to optimise palliative and supportive care for children with cancer, their families and healthcare providers. Particularly, these children and their families are subjected to multiple strains caused by the disease and its treatment. The MyPal digital health platform is designed to address these complex demands by offering pursuant ePRO-based functionalities via two mobile applications, one developed for children and the other for their parents. METHODS AND ANALYSIS: In this observational prospective feasibility study, 100 paediatric oncology patients aged between 6 and 17 years and at least one of their parents/legal guardians will be recruited at three clinical sites in two European countries (Germany and Czech Republic). They will use the mobile applications which are part of the novel digital health platform. During a 6-month study period, participants will complete various ePROs via the applications addressing quality of life, satisfaction with care and impact of the disease on the family at monthly intervals. Additionally, priority-based symptom reporting is integrated into a serious game for children. Outcomes that will be assessed concern the feasibility and the evaluation of the newly designed digital health platform to contribute to the evidence base of clinical ePRO use in paediatric oncology and palliative care process. ETHICS AND DISSEMINATION: The MyPal-Child study obtained ethical approval from the Ethics Committee responsible for the University of Saarland, that is, the Ärztekammer des Saarlandes, the Ethics Committee of the Medical School Hannover and the Ethics Committee of the University of Brno. Study results will be disseminated through scientific publications, presentations at international conferences, congresses and a final report to the European Commission. General publicly accessible information can be found on the project website (www.mypal-project.eu) and social media. TRIAL REGISTRATION NUMBERS: U1111-1251-0043, DRKS00021458, NCT04381221.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2020-045226" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2020-045226</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
2021 Special Edition - Oncology
Bmj Open
Downing J
Garani-Papadatos T
Graf N
health informatics
Karamanidou C
Ling J
Lokaj P
Maramis C
Meyerheim M
Paediatric oncology
paediatric palliative care
Payne C
Payne S
Sander A
Scarfò L
Stamatopoulos K
-
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/10.12968/ijpn.2005.11.9.19781" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2005.11.9.19781</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
Spiritual aspects of end-of-life care for Muslim patients: experiences from Iran
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit
Creator
An entity primarily responsible for making the resource
Cheraghi MA; Payne S; Salsali M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2005.11.9.19781" target="_blank" rel="noreferrer">10.12968/ijpn.2005.11.9.19781</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
Backlog
Cheraghi MA
International Journal of Palliative Nursing
Journal Article
Payne S
PedPal Lit
Salsali 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/10.1191/0269216302pm572oa" target="_blank" rel="noreferrer">http://doi.org/10.1191/0269216302pm572oa</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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Differences in understanding of specialist palliative care amongst service providers and commissioners in South London
Publisher
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Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Humans; Attitude of Health Personnel; Non-U.S. Gov't; Research Support; Palliative Care/organization & administration; referral and consultation; Neoplasms/therapy; Delivery of Health Care/organization & administration; London; Terminology
Creator
An entity primarily responsible for making the resource
Payne S; Sheldon F; Jarrett N; Large S; Smith P; Davis CL; Turner P; George S
Description
An account of the resource
This paper describes a study that sought to identify service providers' and commissioners' understanding of specialist palliative care within the context of changing service provision in one area of South London. Using a formative evaluation framework, we examined the views of 44 providers and commissioners from statutory and voluntary health and social care services about their understanding of specialist palliative care services and, in particular, the remit of current service provision delivered by a Marie Curie Centre. Face-to-face audiotaped semi-structured interviews were conducted. A qualitative thematic analysis highlighted a number of issues including a lack of consensus about definitions of palliative care, ambivalence about referral procedures, and a lack of role clarity between specialist and generalist palliative care providers. The study took place within the real world context of changing services and economic pressures. This raises methodological issues about how services are evaluated and what terminology is used to describe end-of-life care. The study findings confirm that confusion about terminology and referral criteria remain major issues for clinical workers and organizations seeking to access services.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1191/0269216302pm572oa" target="_blank" rel="noreferrer">10.1191/0269216302pm572oa</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
2002
Attitude Of Health Personnel
Backlog
Davis CL
Delivery of Health Care/organization & administration
George S
Humans
Jarrett N
Journal Article
Large S
London
Neoplasms/therapy
Non-U.S. Gov't
Palliative Care/organization & Administration
Palliative Medicine
Payne S
Referral And Consultation
Research Support
Sheldon F
Smith P
Terminology
Turner P
-
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
Book Publications
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.
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
Qualitative methodology
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
2009
Subject
The topic of the resource
medicine
Creator
An entity primarily responsible for making the resource
Payne S
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
Book/Book Section
2009
Book/Book Section
Medicine
Palliative Medicine
Payne 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
May 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
Parental Decision-making On
Utilisation Of Out-of- Home Respite In Children’s Palliative Care: Findings Of
Qualitative Case Study Research - A Proposed New Model.
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adolescent; Adult; Child; Child Preschool; Decision Making; Female; Humans; Ireland/epidemiology; Longitudinal Studies; Male; Palliative Care/psychology; Parents/psychology; Qualitative Research; Quality Of Health Care; Respite Care; Social Support; Terminally Ill/psychology
Children; Pediatrics; Palliative Care; Parents; Respite
Creator
An entity primarily responsible for making the resource
Ling J; Payne S; Connaire K; McCarron M
Description
An account of the resource
Background
Respite in children's palliative care aims to provide a break for family's from the routine of caring. Parental decision-making regarding the utilisation of out-of-home respite is dependent on many interlinking factors including the child's age, diagnosis, geographical location and the family's capacity to meet their child's care needs. A proposed model for out-of-home respite has been developed based on the findings of qualitative case study research.
Methods
Utilising multiple, longitudinal, qualitative case study design, the respite needs and experiences of parents caring for a child with a life-limiting condition were explored. Multiple, in-depth interviews were undertaken with the parents identified by a hospital-based children's palliative care team. Data were analysed using thematic analysis. Each individual case consists of a whole study. Cross-case comparison was also conducted.
Results
Nine families were recruited and followed for two years. A total of 19 in-depth interviews were conducted with mothers and fathers (one or both) caring for a child with a life-limiting condition in Ireland. Each family reported vastly different needs and experiences of respite from their own unique perspective. Cross-case comparison showed that for all parents utilising respite care, regardless of their child's age and condition, home was the location of choice. Many interlinking factors influencing these decisions included: past experience of in-patient care, and trust and confidence in care providers. Issues were raised regarding the impact of care provision in the home on family life, siblings and the concept of home.
Conclusion
Respite is an essential element of children's palliative care. Utilisation of out-of-home respite is heavily dependent on a number of interlinked and intertwined factors. The proposed model of care offers an opportunity to identify how these decisions are made and may ultimately assist in identifying the elements of responsive and family-focused respite that are important to families of children with life-limiting conditions.
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
Adolescent
Adult
Child
Child Preschool
Child: Care, Health and Development
Children
Connaire K
Decision Making
Female
Humans
Ireland/epidemiology
Ling J
Longitudinal Studies
Male
May 2016 List
McCarron M
Palliative Care
Palliative Care/psychology
Parents
Parents/psychology
Payne S
Pediatrics
Qualitative Research
Quality Of Health Care
Respite
Respite Care
Social Support
Terminally Ill/psychology