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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
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
A name given to the resource
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
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163231172891" target="_blank" rel="noreferrer noopener">10.1177/02692163231172891</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
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
August 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
August 2018 List
URL Address
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0269216318769196</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
"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
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
2018
Subject
The topic of the resource
human; child; male; terminal care; clinical article; diagnosis; comfort; palliative therapy; conference abstract; friend; Switzerland; oncology; semi structured interview; qualitative research; grandchild; grandparent; literature; cause of death; memory; son
Creator
An entity primarily responsible for making the resource
Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Description
An account of the resource
Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require additional attention. As little is known about the experiences of grandparents losing a grandchild, this study aimed to address this research gap by investigating the experiences of grandparents throughout the end of life care and after the death of a grandchild. Neurological and oncological diseases are the most common causes of death in children older than one year. Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of ten deceased children were interviewed. Four grandchildren died due to an oncology disease and six to a neurological one. Participants were recruited among the families attended by the PPC team of a children's hospital in northern Switzerland. Grandparents were interviewed at least one year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Results: Regardless of the diagnosis and death circumstances of the child, participants described major impact that the child's death had on them and their entire family. Grandparents felt obliged to support the family and constantly be a supportive pillar for the parents. They beared a double psychological burden as they care and mourn twice; for their dying grandchild and for their daughter or son. Grandparents also struggled with communication difficulties concerning disease and death when in contact with other family members, friends and acquaintances. They tried to make sense and processed their loss by remembering the deceased child and finding comfort in the fact that the child and the family did not have to suffer longer painful symptoms. All participants reported being grateful for the time they were able to spend with their grandchild. Conclusion: These findings emphasize the importance of understanding and identifying the suffering of the grandparents. PPC teams can achieve this by actively making contact with them, taking their concerns seriously and demonstrating appreciation for their role in supporting the family.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</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).
2018
August 2018 List
Becker G
Bergstrasser E
Cause Of Death
Child
Clinical Article
Comfort
conference abstract
Diagnosis
Flury M
friend
grandchild
grandparent
Human
literature
Male
Memory
Oncology
Orellana-Rios C
Palliative Medicine
Palliative Therapy
Qualitative Research
Semi Structured Interview
son
Switzerland
Terminal Care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 2020 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 2020 List
URL Address
<a href="http://doi.org/10.1136/medhum-2017-011400" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/medhum-2017-011400</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
How The Fault in Our Stars illuminates four themes of the Adolescent End of Life Narrative
Publisher
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Medical Humanities
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
Adolescent; Adolescent Behavior/psychology; advance care planning; Attitude to Death; Critical Illness/*psychology; Female; Humans; literature; literature and medicine; Male; Medicine in Literature; Modern; narrative ethics; narrative medicine; paediatrics; Terminal Care/*psychology
Creator
An entity primarily responsible for making the resource
Kirkman A O; Hartsock J A; Torke A M
Description
An account of the resource
Adolescents who face life-limiting illness have unique developmental features and strong personal preferences around end of life (EOL) care. Understanding and documenting those preferences can be enhanced by practising narrative medicine. This paper aims to identify a new form of narrative, the Adolescent End of Life Narrative, and recognise four central themes. The Adolescent EOL Narrative can be observed in young adult fiction, The Fault in Our Stars, which elucidates the notion that terminally ill adolescents have authentic preferences about their life and death. Attaining narrative competence and appreciating the distinct perspective of the dying adolescent allows medical providers and parents to support the adolescent in achieving a good death. By thinking with the Adolescent EOL Narrative, adults can use Voicing my CHOiCES, an EOL planning guide designed for adolescents, to effectively capture the adolescent's preferences, and the adolescent can make use of this type of narrative to make sense of their lived experience.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/medhum-2017-011400" target="_blank" rel="noreferrer noopener">10.1136/medhum-2017-011400</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).
2019
Adolescent
Adolescent Behavior/psychology
Advance Care Planning
April 2020 List
Attitude To Death
Critical Illness/*psychology
Female
Hartsock J A
Humans
Kirkman A O
literature
literature and medicine
Male
Medical Humanities
Medicine in Literature
Modern
narrative ethics
narrative medicine
Paediatrics
Terminal Care/*psychology
Torke A M
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2020 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February 2020 List
URL Address
<a href="https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/391">https://pediatrics.aappublications.org/content/141/1_MeetingAbstract/391</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
Use of electronic media in a pediatric palliative aquatics program: Legacy, teaching, research and caveats
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
awareness; brother; California; child; conference abstract; documentation; face; female; grief; hearing; heat; hot water; human; literature; male; memory; motion; palliative therapy; pediatrics; photography; physician; sound; teacher; teaching; touch; videorecording; voice
Creator
An entity primarily responsible for making the resource
Pyatt S; Fisher J M
Description
An account of the resource
Program Goals: Appropriate use of electronic media in a pediatric palliative care setting enhances a family's experience of care given to their child over time and assists in the grieving process. Here we explore multiple uses of electronic media in a pediatric palliative aquatics program operating within a pediatric palliative care facility in California. Evaluation: Electronic media has changed many facets of daily life, including providing palliative care to medically fragile children. Its use provides families with an "electronic biography" of their child and offers siblings a connection to a brother or sister who might have died before their birth. Oral histories are further supported with video data, thereby providing families with an enduring legacy. Loved ones unable to be present at events in "real time" can enjoy the electronic version of the child's experience. The legacy created in this manner exists beyond the grief of the present moment, extending into a time when painful memories become muted, allowing families to remember joyful events in the child's life. Families can photograph and video the child's responses to aquatic sessions, documenting movements and abilities virtually impossible for the child on land. Information can be shared with pediatric care practitioners using electronic media, providing them with detailed documentation of the patient's responses and enhanced abilities during warm water sessions. Consent is always obtained prior to facility use. As always, precautions against inappropriate use of electronic media during aquatics sessions must be assured. Public use of specific photos and film are sensitively screened for appropriateness. In researching program outcomes, the child ultimately becomes both subject and teacher during palliative aquatic sessions. Individual patient responses to sessions can be documented over time, allowing researchers opportunities to observe in slow motion subtle reactions of the patient to movement and touch. The aquatic practitioner-trainees' sense of touch, sight and hearing becomes more acute as s/he observes a child's facial and body reactions to movement, warmth, water pressure and sound. In our ongoing work of training new practitioners, appropriate use of electronic media and careful documentation of sessions has become one of our most valuable teaching tools.
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).
2018
Awareness
Brother
California
Child
conference abstract
Documentation
Face
February 2020 List
Female
Fisher J M
Grief
hearing
Heat
hot water
Human
literature
Male
Memory
motion
Palliative Therapy
Pediatrics
Photography
Physician
Pyatt S
Sound
Teacher
Teaching
touch
videorecording
Voice