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40
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Dublin Core
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Title
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May 2022 List
Text
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May 2022 List
URL Address
<a href="http://doi.org/10.3389/fdgth.2022.730430" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fdgth.2022.730430</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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Ethical Principles in Digital Palliative Care for Children: The MyPal Project and Experiences Made in Designing a Trustworthy Approach
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Frontiers in Digital Health
Date
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2022
Subject
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acceptability; cancer; children; digital health; palliative care; research ethics; trustworthiness
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Garani-Papadatos T; Natsiavas P; Meyerheim M; Hoffmann S; Karamanidou C; Payne SA
Description
An account of the resource
This paper explores the ethical dimension of the opportunity to offer improved electronic patient-reported outcome (ePRO) systems addressing personal needs of pediatric cancer patients, their parents and caregivers, with regard to technological advance of digital health. This opportunity has been explored in the MyPal research project, which aims to assess a patient-centered service for palliative care relying on the adaptation and extension of digital health tools and concepts available from previous projects. Development and implementation of ePROs need to take place in a safe, secure and responsible manner, preventing any possible harm and safeguarding the integrity of humans. To that end, although the final results will be published at the end of the project, this paper aims to increase awareness of the ethical ramifications we had to address in the design and testing of new technologies and to show the essentiality of protection and promotion of privacy, safety and ethical standards. We have thus reached a final design complying with the following principles: (a) respect for the autonomy of participants, especially children, (b) data protection and transparency, (c) fairness and non-discrimination, (d) individual wellbeing of participants in relation to their physical and psychological health status and e) accessibility and acceptability of digital health technologies for better user-engagement. These principles are adapted from the Ethics Guidelines for a trustworthy Artificial Intelligence (AI) which provide the framework for similar interventions to be lawful, complying with all applicable laws and regulations, ethical, ensuring compliance to ethical principles and values and robust, both from a technical and social perspective.
Identifier
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<a href="http://doi.org/10.3389/fdgth.2022.730430" target="_blank" rel="noreferrer noopener">10.3389/fdgth.2022.730430</a>
2022
acceptability
Cancer
Children
digital health
Frontiers in Digital Health
Garani-Papadatos T
Hoffmann S
Karamanidou C
May 2022 List
Meyerheim M
Natsiavas P
Palliative Care
Payne SA
research ethics
trustworthiness
-
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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September 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
September 2021 List
URL Address
<a href="http://doi.org/10.1097/nnr.0000000000000540" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/nnr.0000000000000540</a>
Dublin Core
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Title
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Feasibility and Acceptability of a Reiki Intervention With Very Young Children Receiving Palliative Care
Publisher
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Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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pediatric; child; adolescent; palliative care; feasibility; Reiki; integrative; acceptability
Creator
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Thrane SE; Grossoehme DH; Tan A; Shaner V; Friebert S
Description
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BACKGROUND: Very little research has been reported examining nonpharmacologic symptom management strategies for very young, hospitalized children receiving palliative care, and none has involved Reiki-a light touch therapy. OBJECTIVES: To determine if completing a Reiki intervention with hospitalized 1- to 5-year-old children with chronic, life-limiting conditions receiving palliative care was feasible and acceptable. METHODS: Children ages 1 to 5 years receiving palliative care who were expected to be hospitalized for at least 3 weeks were recruited for a single-arm, mixed-methods, quasi-experimental pre/poststudy. Six protocolized Reiki sessions were conducted over 3 weeks. We calculated feasibility by the percentage of families enrolled in the study and acceptability by the percentage of families who completed all measures and 5 out of 6 Reiki sessions. Measures were collected at baseline, the end of the intervention period, and three weeks later. At the final follow-up visit, parents were verbally asked questions relating to the acceptability of the intervention in a short structured interview. RESULTS: We screened 90 families, approached 31 families, and recruited 16 families while 15 families declined. Reasons for not participating included that the child had "a lot going on," would be discharged soon, and families were overwhelmed. Of those enrolled, most completed all measures at three time points and 5 out of 6 Reiki sessions. We completed nearly all scheduled Reiki sessions for families that finished the study. All parents reported that they would continue the Reiki if they could, and almost all said they would participate in the study again; only one parent was unsure. DISCUSSION: Young children and their parents found Reiki acceptable; these results are comparable to an earlier study of children 7-16 years receiving palliative care at home and a study of massage for symptom management for hospitalized children with cancer. These findings add to the literature and support further investigation of Reiki's efficacy as a nonpharmacologic symptom management intervention.
Identifier
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<a href="http://doi.org/10.1097/nnr.0000000000000540" target="_blank" rel="noreferrer noopener">10.1097/nnr.0000000000000540</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
acceptability
Adolescent
Child
Feasibility
Friebert S
Grossoehme DH
integrative
Nursing Research
Palliative Care
Pediatric
Reiki
September 2021 List
Shaner V
Tan A
Thrane SE
-
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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January 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
January 2021 List
URL Address
<a href="http://doi.org/10.1097/njh.0000000000000714" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/njh.0000000000000714</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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Feasibility and Acceptability of Reiki Therapy for Children Receiving Palliative Care in the Home
Publisher
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Journal of Hospice and Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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acceptability; adolescent; child; feasibility; integrative; palliative care; pediatric; Reiki
Creator
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Thrane SE; Maurer SH; Danford CA
Description
An account of the resource
Reiki is often used but not well studied in children. Yet, this gentle, light-touch therapy promotes relaxation and is appropriate for those receiving palliative care. This quasi-experimental pre-post mixed-methods 1-group pilot study examined the feasibility and acceptability of Reiki therapy as a treatment for children aged 7 to 16 years receiving palliative care. During the study, we recorded recruitment, retention, data collection rates, and percent completion of the intervention. Structured interviews with the mothers and verbal children were conducted to elicit their experience. Qualitative data were analyzed using thematic analysis. Twenty-one parent-child dyads agreed to participate and signed consent, whereas 16 completed the study (including verbal [n = 8] and nonverbal [n = 8] children). Themes included "feeling better," "hard to judge," and "still going on." Mothers and children were generally positive regarding the experience of receiving Reiki therapy. Children reported they "felt really relaxed," and mothers stated, "It was a good experience" and "She was relaxed afterward." The results of this pilot study show that Reiki was feasible, acceptable, and well-tolerated. Most participants reported it was helpful. Reiki therapy may be a useful adjunct with traditional medical management for symptoms in children receiving palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/njh.0000000000000714" target="_blank" rel="noreferrer noopener">10.1097/njh.0000000000000714</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).
2020
acceptability
Adolescent
Child
Danford CA
Feasibility
integrative
January 2021 List
Journal of Hospice and Palliative Nursing
Maurer SH
Palliative Care
Pediatric
Reiki
Thrane SE
-
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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October 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
October 2019 List
URL Address
<a href="http://doi.org/10.1177/0269216319867214" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216319867214</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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Use of time in people with a life-limiting illness: A longitudinal cohort feasibility pilot study
Publisher
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Palliative Medicine
Date
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2019
Subject
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adult; article; child; cohort analysis; female; human; male; palliative therapy; controlled study; clinical article; palliative care; quality of life; caregiver; feasibility study; outpatient; accelerometry; acceptability; Australia; burden; cohort study; European Quality of Life 5 Dimensions Questionnaire; Feasibility; Karnofsky Performance Status; multimedia; numeric rating scale; pilot study; recall; time-use
Creator
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Jones T A; Olds T S; Currow D C; Williams M T
Description
An account of the resource
Background: To date, time-use studies in palliative care have been limited to exploration of time commitments of caregivers. Understanding time-use in people with a life-limiting illness might provide insight into disease progression, symptom management and quality of life. Aim(s): To determine the feasibility of a repeated-measures, time-use study in people with a life-limiting illness, and their primary caregivers, and to explore associations between time-use and perceived quality of life. Design(s): An observational repeated-measures feasibility pilot study. A priori criteria were established for study uptake (70%), retention (80%) and study value/burden (7 Numerical Rating Scale 0-10). Burden and value of the study, use of time (Multimedia Activity Recall for Children and Adults with adjunctive accelerometry) and quality of life data (EuroQol-5 Dimension-5-Level Health Questionnaire and Australia-modified Karnofsky Performance Status scale) were assessed at time-points across five consecutive months. Setting/participants: People living with a life-limiting illness and caregivers recruited from Southern Adelaide Palliative Services outpatient clinics. Result(s): A total of 10 participants (2 caregivers and 8 people with a life-limiting illness) enrolled in the study. All but one of the criteria thresholds was met: 66% of participants who consented to be screened were enrolled in the study, 80% of enrolled participants (n = 8) completed all assessments (two participants died during the study) and mean Numerical Rating Scale scores for acceptable burden and value of the study exceeded the criteria thresholds at every time-point. Conclusion(s): A repeated-measures time-use study design is feasible and was not unduly burdensome for caregivers and people living with a life-limiting illness. Copyright © The Author(s) 2019.
Identifier
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<a href="http://doi.org/10.1177/0269216319867214" target="_blank" rel="noreferrer noopener">10.1177/0269216319867214</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).
2019
accelerometry
acceptability
Adult
Article
Australia
burden
Caregiver
Child
Clinical Article
Cohort Analysis
cohort study
Controlled Study
Currow D C
European Quality of Life 5 Dimensions Questionnaire
Feasibility
Feasibility Study
Female
Human
Jones T A
Karnofsky Performance Status
Male
multimedia
numeric rating scale
October 2019 List
Olds T S
Outpatient
Palliative Care
Palliative Medicine
Palliative Therapy
Pilot Study
Quality Of Life
Recall
time-use
Williams M T