1
40
908
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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/10.12968/ijpn.2022.28.5.193" target="_blank" rel="noreferrer noopener">http://doi.org/10.12968/ijpn.2022.28.5.193</a>
Dublin Core
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Title
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'I No Longer Feel Alone': Meeting the Needs of Bereaved Grandparents Through a Children's Hospice Support Group
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
2022
Subject
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Bereavement; Grief; Child; Palliative care; Adult; Children; Hospice; Grandparents; Family centred care
Creator
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Tatterton M J; Lyon JA
Description
An account of the resource
BACKGROUND: Children's hospices provide a range of family-centred care services, including bereavement support. Not all hospices provide specific services for grandparents. AIM: To explore how a hospice-based bereavement support group supported grandparents in their grief following the death of a grandchild. METHODS: Grandparents attending a group were invited to complete an anonymous questionnaire. Questionnaires from eight groups, run between 2015 and 2019 were collated and interpreted to identify themes. FINDINGS: A total of 121 grandparents attended the groups; 113 returned the questionnaires (93% response). A total of three superordinate themes were identified: environment and space, being with people who understand, and the opportunity to hear the stories of others. Grandparents valued hearing the stories of others, providing an opportunity to reflect on the experience of others. CONCLUSION: Grandparents felt supported and validated by the group. Facilitated sessions increased coping and resilience of participants, enabling grandparents to support their partner, adult children and surviving grandchildren more effectively.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2022.28.5.193" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2022.28.5.193</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
Adult
Bereavement
Child
Children
Family centred care
Grandparents
Grief
Hospice
International Journal of Palliative Nursing
Lyon JA
Palliative Care
September 2022 List
Tatterton M J
-
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
2018 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
Oncology 2018 List
URL Address
<a href="http://doi.org/10.1016/j.pec.2017.03.028" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1016/j.pec.2017.03.028</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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'Just gripping my heart and squeezing': Naming and explaining the emotional experience of receiving bad news in the paediatric oncology setting
Publisher
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Patient education and counseling
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Physician-Patient Relations; Medical Oncology; Male; Communication; Child; Humans; Adult; Pediatrics; Female; Parents/px [Psychology]; Emotions; Truth Disclosure
Creator
An entity primarily responsible for making the resource
Nelson M; Kelly D; McAndrew R; Smith P
Description
An account of the resource
OBJECTIVE: To explore recipients' perspectives on the range and origins of their emotional experiences during their 'bad news' consultations., METHODS: Participants were four bereaved families of children who had changed from active treatment to palliative care in paediatric oncology. Data was collected using emotional touchpoint storytelling. The names (descriptors) given to the emotional experiences were linguistically classified. Explanations of their perceived origins were examined using applied thematic analysis., RESULTS: 26 descriptors were given, relating to bodily sensations, affective states, evaluations and cognitive conditions. Three themes were identified in the origins of these experiences - 'becoming aware', 'the changes' and 'being in this situation'. Parents described strong emotional displays during the consultation including physical collapse. These related to the internal process of 'becoming aware'. Three descriptors were given as originating from the clinicians and their delivery of the news - 'supported', 'included', 'trusting'., CONCLUSIONS: Recipients perceive their emotional experiences as mainly originating from the news itself, and perceived consequences of it, rather than its delivery. Strong emotional reactions during the interaction are not necessarily an indicator of ineffectual delivery., PRACTICE IMPLICATIONS: Findings offer a thematic framing that may support and deepen practitioners understanding of recipients' emotional reactions during bad news consultations.Crown Copyright � 2017. Published by Elsevier B.V. All rights reserved.
Identifier
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<a href="http://doi.org/%2010.1016/j.pec.2017.03.028" target="_blank" rel="noreferrer noopener">10.1016/j.pec.2017.03.028</a>
2017
Adult
Child
Communication
Emotions
Female
Humans
Kelly D
Male
McAndrew R
Medical Oncology
Nelson M
Oncology 2018 List
Parents/px [psychology]
Patient Education and Counseling
Pediatrics
Physician-patient Relations
Smith P
Truth Disclosure
-
Dublin Core
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Title
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Oncology
Text
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Citation List Month
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">http://doi.org/10.1080/07347332.2016.1147913</a>
Dublin Core
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Title
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"His ears are so soft!" Animal-assisted interventions in oncology settings: Implications for oncology social work practice
Publisher
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Journal Of Psychosocial Oncology
Date
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2016
Subject
The topic of the resource
Clinical Practice; Ear; Oncology; Skill; Social Work Practice; 50-56-6 (oxytocin); 51-61-6 (dopamine); 62-31-7 (dopamine); 54577-94-5 (oxytocin); 60118-07-2 (endorphin); Adult; Animal Experiment; Animal Model; Anxiety; Blood Pressure; Cancer Patient; Cancer Therapy; Cerebrovascular Accident; Distress Syndrome; Dog; Dopamine; Endogenous Compound; Endorphin; Family Study; Female; Gene Expression; Happiness; Heart Rate; Hospice; Hospital Patient; Human; Human Versus Animal Comparison; Infusion; Male; Narrative; Nonhuman; Oxytocin; Pain; Palliative Therapy; Pet Therapy; Program Development; Recreation; Social Support; Storytelling; Symptom; Total Quality Management; Trust; Volunteer; Waiting Room
Creator
An entity primarily responsible for making the resource
Bach C
Description
An account of the resource
Content: The use of recreational, expressive, and integrative methods of providing supportive care to patients and families coping with cancer is growing in cancer treatment settings. One such method is animal-assisted interventions (AAI). From the clinic to the infusion suite, to the palliative care office, and to the inpatient hospice, the presence of therapy animals provides an another layer of therapeutic intervention to assist in coping with cancer. AAI can provide cancer patients with an opportunity for emotional support, diversion, recreation, sensory integration/tactile benefit, social support, companionship, and relief of distress and symptoms including pain, depression, anxiety, and isolation. Research also suggests that the simple act of petting a dog can lower heart rate and blood pressure (Friedman, 2015), as well as increase levels of oxytocin, dopamine, and endorphins (Uyemura, 2013). Oxytocin influences happiness and trust in individuals. "Oxytocin has some powerful effects for us in the body's ability to be in a state of readiness to heal.so it predisposes us to an environment in our bodies where we can be healthier" (http://www.npr.org/sections/health-shots/2012/03/09/146583986/ pet-therapy-how-animals-and-humans-heal-each-other). In addition, the therapy animal serves as a vehicle of communication, narrative, and storytelling. Imagine a patient sitting anxiously in the waiting room. He or she strokes the therapy dog gently and is taken to another time and place without cancer. He or she reflects on his or her own dog's roles in his or her life, how he or she rescued the dog, plays with the dog, sleeps with the dog. He or she is distracted, relaxed, and utilizing his or her own story to invoke feelings of happiness, normalcy, and hope. This presentation will examine the history, function, and roles of animal-assisted therapy and activities in various settings. The benefits of AAI with cancer patients (both adults and children) as well as with oncology professionals will also be presented. AAI as a method of integrative supportive oncology therapy will be addressed. The benefits of AAI as well as barriers and limitations for these programs in oncology settings will be reviewed. We will explore AAI program development and evaluation through presentation of results from quality improvement surveys completed by program participants. Suggestions for program development, volunteer recruitment and retention, and therapy dog support will also be discussed. Case presentations of AAI in action from various oncology settings will be a highlight of this presentation.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07347332.2016.1147913" target="_blank" rel="noreferrer">10.1080/07347332.2016.1147913</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).
2016
50-56-6 (oxytocin)
51-61-6 (dopamine)
54577-94-5 (oxytocin)
60118-07-2 (endorphin)
62-31-7 (dopamine)
Adult
Animal Experiment
Animal Model
anxiety
Bach C
Blood Pressure
Cancer Patient
Cancer Therapy
Cerebrovascular Accident
Clinical Practice
Distress Syndrome
Dog
Dopamine
Ear
Endogenous Compound
Endorphin
Family Study
Female
Gene Expression
Happiness
Heart Rate
Hospice
Hospital Patient
Human
Human Versus Animal Comparison
Infusion
Journal Of Psychosocial Oncology
Male
Narrative
Nonhuman
Oncology
Oncology 2017 List
Oxytocin
Pain
Palliative Therapy
Pet Therapy
Program Development
Recreation
Skill
Social Support
Social Work Practice
Storytelling
Symptom
Total Quality Management
Trust
Volunteer
Waiting Room
-
Dublin Core
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Title
A name given to the resource
2019 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
Oncology 2019 List
URL Address
<a href="http://doi.org/10.1089/jayao.2019.0015" target="_blank" rel="noreferrer noopener">http://doi.org/10.1089/jayao.2019.0015</a>
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Title
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"It Could Have Been Me": An Interpretive Phenomenological Analysis of Health Care Providers' Experiences Caring for Adolescents and Young Adults with Terminal Cancer
Publisher
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Journal of adolescent and young adult oncology.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; article; Canada; clinician; controlled study; health care delivery; health care personnel; human; nurse; semi structured interview; terminal care; uncertainty; wellbeing; young adult
Creator
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Tutelman P R; Drake E K; Urquhart R
Description
An account of the resource
Purpose: Adolescents and young adults (AYAs) with terminal cancer are a marginalized population with unique medical and psychosocial needs. AYAs commonly report challenges with their health care experiences, however, little is known about the experiences of the health care providers (HCPs) who deliver this specialized care. The purpose of the current study was to understand HCPs' experiences caring for AYAs with terminal cancer.
Identifier
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<a href="http://doi.org/10.1089/jayao.2019.0015" target="_blank" rel="noreferrer noopener">10.1089/jayao.2019.0015</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
Adult
Article
Canada
Clinician
Controlled Study
Drake E K
Health Care Delivery
Health Care Personnel
Human
Journal of adolescent and young adult oncology.
Nurse
Oncology 2019 List
Semi Structured Interview
Terminal Care
Tutelman P R
Uncertainty
Urquhart R
Wellbeing
Young Adult
-
Dublin Core
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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/10.3390/children9030322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030322</a>
Dublin Core
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Title
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"It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer
Creator
An entity primarily responsible for making the resource
Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ
Description
An account of the resource
Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland.
Identifier
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<a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener">10.3390/children9030322</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).
2022
Adult
Aoun SM
Article
Australia
Caregiver Support
Children
clinical monitoring
Controlled Study
Cuddeford L
Deleuil R
Emotion
emotional support
empowerment
family support
Feasibility Study
Female
Gill FJ
Hospice Care
Human
July List 2023
Lyon ME
Male
Momber S
Palliative Care
Palliative Therapy
Parent
pediatric patient
Phillips MB
psychosocial care
Public Health
Qualitative Research
Stegmann R
Terminal Care
tertiary care center
Thematic Analysis
Volunteer
-
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 2017 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
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"it Scares Me To Know That We Might Not Have Been There!": A Qualitative Study Into The Experiences Of Parents Of Seriously Ill Children Participating In Ethical Case Discussions
Publisher
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Bmc Med Ethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Communication; Critical Illness; Ethics Committees Clinical; Ethics Medical; Parents; Patient Participation; Patient Satisfaction; Adult; Child; Decision Making/ethics; Humans; Norway; Only Child; Qualitative Research
Creator
An entity primarily responsible for making the resource
Forde R; Linja T
Description
An account of the resource
BACKGROUND: All hospital trusts in Norway have clinical ethics committees (CEC). Some of them invite next of kin/patients to be present during the discussion of their case. This study looks closer at how parents of seriously ill children have experienced being involved in CEC discussions. METHODS: Ten next of kin of six seriously ill children were interviewed. Their cases were discussed in two CECs between April of 2011 and March of 2014. The main ethical dilemma was limitation of life-prolonging treatment. Health care personnel who could elucidate the case were also present in the discussion. The interviewer observed each discussion and then interviewed the next of kin shortly after the meeting, following a structured interview guide. RESULTS: All next of kin emphasized that it had been important for them to be present. They stressed the important role of the CEC chair and appreciated that their case was discussed in a systematic way. Some next of kin appreciated that the child's impending death was discussed openly, and believed that this would facilitate their future grieving. Having had an opportunity to hear all the arguments behind the decision to be made would probably help them to accept the road ahead. All of them felt that they were taken seriously and listened to. They felt that they had added vital information to the discussion. All but one couple did not want any decision-making responsibility, some of them even worried that they might have influenced the discussion too much. CONCLUSIONS: None of the next of kin felt that being present during the CEC discussion had been too heavy a burden. On the contrary, they claimed that their presence in a CEC discussion may add vital information to the discussion and may improve the quality of the decision. It is important that the CEC's role is explained to them so they are well prepared for what to expect. They need to be followed up after the discussion.
Identifier
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https://doi.org/10.1186/s12910-015-0028-6
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).
2015
Adult
BMC Med Ethics
Child
Communication
Critical Illness
Decision Making/ethics
Ethics Committees Clinical
Ethics Medical
Forde R
Humans
Linja T
May 2017 List
Norway
Only Child
Parents
Patient Participation
Patient Satisfaction
Qualitative Research
-
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
2020 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
Oncology 2020 List
URL Address
<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">http://doi.org/10.1200/JOP.19.00313</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
"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
Publisher
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Journal of Oncology Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
The topic of the resource
family; human; adult; female; male; perception; article; aged; Canada; adolescent; young adult; health personnel attitude; cancer palliative therapy; physician; psychiatrist; tertiary care center; experience; qualitative research; semi structured interview; thematic analysis; advanced cancer; radiation oncologist; care behavior; clinician parent communication difficulty; advanced practice nurse; theoretical study; medical oncologist; counter transference
Creator
An entity primarily responsible for making the resource
Avery J; Geist A; D'Agostino N M; Kawaguchi S K; Mahtani R; Mazzotta P; Mosher P J; al-Awamer A; Kassam A; Zimmermann C; Samadi M; Tam S; Srikanthan A; Gupta A
Description
An account of the resource
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">10.1200/JOP.19.00313</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
Adolescent
Adult
Advanced Cancer
Advanced Practice Nurse
Aged
al-Awamer A
Article
Avery J
Canada
Cancer Palliative Therapy
care behavior
clinician parent communication difficulty
counter transference
D'Agostino N M
Experience
Family
Female
Geist A
Gupta A
Health Personnel Attitude
Human
Journal of Oncology Practice
Kassam A
Kawaguchi S K
Mahtani R
Male
Mazzotta P
medical oncologist
Mosher P J
Oncology 2020 List
Perception
Physician
psychiatrist
Qualitative Research
radiation oncologist
Samadi M
Semi Structured Interview
Srikanthan A
Tam S
tertiary care center
Thematic Analysis
theoretical study
Young Adult
Zimmermann C
-
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
December 2017 List
URL Address
<a href="http://doi.org/10.1017/S1478951515000826" target="_blank" rel="noreferrer">http://doi.org/10.1017/S1478951515000826</a>
Notes
<p>Using Smart Source Parsing<br />( (pp Date of Publication: 01 Jun 2016</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
"It's not about treatment, it's how to improve your life": The lived experience of occupational therapy in palliative care
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Professional-patient Relationship; Psychology; Adolescent; Adult; Aged; Australia; Female; Human; Male; Middle Aged; Occupational Therapy; Palliative Therapy; Procedures; Qualitative Research; Quality Of Life; Standards; Very Elderly
Creator
An entity primarily responsible for making the resource
Badger S; Macleod R; Honey A
Description
An account of the resource
OBJECTIVES: A key aim of palliative care is to improve the quality-of-life of people with a life-threatening illness. Occupational therapists are well positioned to contribute to this aim due to their broad range of interventions, client-centeredness and focus on occupation. However, there is a limited understanding of how occupational therapy contributes to the end-of-life experience, which is crucial to providing optimal care. The aim of this study is to investigate the lived experience of occupational therapy in palliative care for people with a life-threatening illness. METHOD: A hermeneutic interpretive phenomenological approach was adopted. Semi-structured interviews were conducted with eight participants recruited from inpatient and outpatient sectors of a specialist palliative care hospital in Sydney, Australia. RESULTS: The two themes developed from participant responses were: (1) occupational therapy provides comfort and safety and (2) trusting the occupational therapist to know what is needed. SIGNIFICANCE OF RESULTS: This study gives insight into the ways in which people with a life-threatening illness experience occupational therapy in palliative care. In addition, it provides a starting point to guide practice that is attentive to the needs of people with a life-threatening illness at end-of-life, thus enhancing client-centered care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S1478951515000826" target="_blank" rel="noreferrer">10.1017/S1478951515000826</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).
2016
Adolescent
Adult
Aged
Australia
Badger S
December 2017 List
Female
Honey A
Human
Macleod R
Male
Middle Aged
Occupational Therapy
Palliative & Supportive Care
Palliative Therapy
Procedures
Professional-patient Relationship
Psychology
Qualitative Research
Quality Of Life
Standards
Very Elderly
-
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/10.1097/00005721-200105000-00004" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005721-200105000-00004</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
"The one thing you can never take away"
Publisher
An entity responsible for making the resource available
The American Journal Of Maternal Child Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Humans; infant; Male; Fetal Death; Grief; Pregnancy; Adult; Newborn; social support; Photography; Maternal-Child Nursing
Creator
An entity primarily responsible for making the resource
Alexander KV
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005721-200105000-00004" target="_blank" rel="noreferrer">10.1097/00005721-200105000-00004</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
This article describes one nurse's experience resulting from her interest in the value of giving bereavement photographs to parents who experience a perinatal loss. Three families were interviewed about the meaning of those photographs. The parents described deep feelings of the importance of the photographs, which provided the parents with unquestionable proof of their baby's existence. The information discovered through these interviews provides a basic look at how visual memories of the infant can help in the healing process. Nurses are encouraged to standardize and personalize perinatal loss policies and procedures, to incorporate photography into these policies, and to conduct research to evaluate the effectiveness of this intervention.
2001
Adult
Alexander KV
Backlog
Female
Fetal Death
Grief
Humans
Infant
Journal Article
Male
Maternal-Child Nursing
Newborn
Photography
Pregnancy
Social Support
The American Journal Of Maternal Child Nursing
-
Dublin Core
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Title
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2018 Developing World 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
Developing World 2018 List
URL Address
<a href="http://doi.org/10.1177/0030222816629165" target="_blank" rel="noreferrer noopener">http://doi.o
rg/10.1177/0030222816629165</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
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
Publisher
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Omega (Westport)
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
death and dying; bereavement; Male; Infant Newborn; Young Adult; Humans; Adult; Female; Infant; Interviews as Topic; Infant Mortality; Adaptation Psychological; Mothers/ psychology; Ghana; perinatal death; qualitative research; infant mortality; Grief; infant loss; low-resource country; Medically Underserved Area
Creator
An entity primarily responsible for making the resource
Meyer AC; Opoku C; Gold K J
Identifier
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<a href="http://doi.org/10.1177/0030222816629165" target="_blank" rel="noreferrer noopener">10.1177/0030222816629165</a>
2018
Adaptation Psychological
Adult
Bereavement
Death and Dying
Developing World 2018 List
Female
Ghana
Gold K J
Grief
Humans
Infant
Infant Newborn
infant loss
Infant Mortality
Interviews As Topic
low-resource country
Male
Medically Underserved Area
Meyer AC
Mothers/ Psychology
Omega (Westport)
Opoku C
Perinatal Death
Qualitative Research
Young Adult
-
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 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
August List 2023
URL Address
<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/02692163231180926</a>
Dublin Core
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Title
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"They were here, and they still matter": A qualitative study of bereaved parents legacy experiences and perceptions
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; United States; Bereavement; adult; article; human; palliative therapy; grief; young adult; sibling; quality of life; epistemology; qualitative research; language; phenomenology; caregiver; perception; genetic transcription; semi structured interview; ritual; altruism
Creator
An entity primarily responsible for making the resource
Jones MT; Albanese E; Boles JC
Description
An account of the resource
BACKGROUND: Legacy building interventions are used in pediatric healthcare settings to help families cope with difficult healthcare experiences and typically reserved for intentional use at or near the end of a child's life. However, little is known about how bereaved families perceive the concept of legacy that these practices are meant to address. Emerging research challenges the view of legacy as a standardized, handheld keepsake item but rather as a summation of qualities and experiences that affect those left behind. Therefore, more research is needed. AIM: To explore the legacy perceptions and experiences of bereaved parents/caregivers in an effort to inform legacy-oriented interventions in pediatric palliative care. DESIGN: In this qualitative, phenomenological study grounded in social constructionist epistemology, bereaved parent/caregivers completed a semi-structured interview about their legacy perceptions and experiences. The interviews were audio-recorded, transcribed, and analyzed using an inductive, open coding approach grounded in psychological phenomenology. SETTING/PARTICIPANTS: Participants were parents/caregivers and one adult sibling of children (ages 6months-18years) that died between 2000 and 2018 at a children's hospital in the Southeastern United States and spoke English as their primary language. <br/>RESULT(S): Sixteen parents/caregivers and one adult sibling were interviewed. Participants' responses converged across three themes: (1) definitions of legacy, including traits and characteristics, impacts on others, and the child's enduring presence; (2) manifestations of legacy, such as tangible items, experiences, traditions, and rituals, and altruism; and (3) factors perceived to affect legacy experiences, including characteristics of the child's death and one's personal grief process. <br/>CONCLUSION(S): Bereaved parents/caregivers define and experience their child's legacy in ways and manifestations that conflict with current legacy building interventions used in pediatric healthcare settings. Thus, an immediate shift from standardized legacy-oriented care to individualized assessment and intervention is needed to provide high-quality patient- and family-centered pediatric palliative care.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/02692163231180926" target="_blank" rel="noreferrer noopener">10.1177/02692163231180926</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).
2023
Adult
Albanese E
Altruism
Article
August List 2035
Bereavement
Boles JC
Caregiver
Child
epistemology
genetic transcription
Grief
Human
Jones MT
Language
Palliative Medicine
Palliative Therapy
Perception
Phenomenology
Qualitative Research
Quality Of Life
ritual
Semi Structured Interview
Sibling
United States
Young Adult
-
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 2024 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 List 2024
URL Address
<a href="http://doi.org/10.3390/children11020224" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children11020224</a>
Dublin Core
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Title
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"We Want to Talk about Death, Dying and Grief and to Learn about End-of-Life Care"-Lessons Learned from a Multi-Center Mixed-Methods Study on Last Aid Courses for Kids and Teens
Publisher
An entity responsible for making the resource available
Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Adolescent; Terminal Care; terminal care; adult; article; human; male; palliative therapy; aged; Europe; Australia; grief; interview; education; dying; adolescent; questionnaire; curriculum; awareness; literacy
Creator
An entity primarily responsible for making the resource
Bollig G; Graf K; Gruna H; Drexler D; Pothmann R
Description
An account of the resource
Background: Last Aid Courses (LAC) for adults have been established in 21 countries in Europe, Australia and America to improve the public discussion about death and dying and to empower people to participate in end-of-life care provision. In 2018, the first Last Aid Courses for kids and teens (LAC-KT) were introduced. The aim of the study was to explore the views and experiences of the course participants and Last Aid Course instructors on the LAC-KT. Methods: A mixed-methods approach was used. The views of the LAC-KT participants, aged 7 to 17 years, on the LAC-KT were collected using a questionnaire. In addition, the experiences of the Last Aid Course instructors were explored in focus group interviews. Results: The results show that 84% of the participants had experiences with death and dying and 91% found the LAC-KT helpful for everyone. The majority of the participants appreciate the opportunity to talk and learn about death, dying, grief and palliative care. Conclusions: The LAC-KT is feasible, very well accepted and a welcome opportunity for exchanging and obtaining information about dying, grief and palliative care. The findings of the study indicate that the LAC-KT should be offered to all interested children and teenagers and included in the school curriculum.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3390/children11020224" target="_blank" rel="noreferrer noopener">10.3390/children11020224</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).
2024
Adolescent
Adult
Aged
April List 2024
Article
Australia
Awareness
Bollig G
Child
Children
Curriculum
Drexler D
Dying
Education
Europe
Graf K
Grief
Gruna H
Human
Interview
literacy
Male
Palliative Therapy
Pothmann R
Questionnaire
Terminal Care
-
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/10.3109/01460862.2013.797520" target="_blank" rel="noreferrer">http://doi.org/10.3109/01460862.2013.797520</a>
Dublin Core
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Title
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"You've only got one chance to get it right": children's cancer nurses' experiences of providing palliative care in the acute hospital setting
Publisher
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Issues In Comprehensive Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Female; Humans; Young Adult; Neoplasms; Adult; Oncology Nursing; Pediatric Nursing; Hospitals; Palliative Care
Creator
An entity primarily responsible for making the resource
Pearson HN
Description
An account of the resource
The aim of this study was to understand children's cancer nurses experiences of providing palliative care in the acute hospital setting. Palliative care for children with cancer is rarely hospital- centred and predominately care is provided in the community or hospice setting. Vast research has looked at the experiences of children's nurses providing palliative care within the child's home environment or the hospice. This research has suggested that nurses need adequate support to avoid stress and burnout. Parental views focus on the nurses attributes as opposed to the clinical skills which are required. This research study wanted to ascertain whether specific educational preparation or support is needed to prepare children's cancer nurses in providing palliative care in the acute hospital setting. The research study used a qualitative approach with semi-structured in-depth interviews across three primary treatment centers within the United Kingdom that provide cancer care to children. Data were collected and analyzed using a phenomenological approach. Data were collected between October 2011 and February 2012. Interviews took place in the participants preferred location and lasted between 45 and 60 min. Data were analyzed using the Strauss and Corbin method. Five themes emerged which were "lack of a plan", "managing the symptoms", 'family", and "experience". Categories within these themes were devised from participant narratives. The findings of this research study suggest nurses need specific palliative care education not only at pre-registration level but also continuing professional development.
2013-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3109/01460862.2013.797520" target="_blank" rel="noreferrer">10.3109/01460862.2013.797520</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
2013
Adult
Backlog
Child
Female
Hospitals
Humans
Issues In Comprehensive Pediatric Nursing
Journal Article
Neoplasms
Oncology Nursing
Palliative Care
Pearson HN
Pediatric Nursing
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March 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
“have No Regrets:” Parents’ Experiences And Developmental Tasks In Pregnancy With A Lethal Fetal Diagnosis.
Publisher
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Social Science & Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Adult; Choice Behavior; Emotions; Female; Fetal Diseases/diagnosis; Fetal Diseases/mortality; Humans; Infant; Longitudinal Studies; Male; Middle Aged; Needs Assessment; Palliative Care; Parents/psychology; Perinatal Care; Pregnancy; Prenatal Diagnosis/psychology; Qualitative Research; Young Adult
Developmental Task; Lethal Fetal Diagnosis; Longitudinal; Perinatal Palliative Care; Phenomenology; Pregnancy; Prenatal Diagnosis; Usa
Creator
An entity primarily responsible for making the resource
Cote-Arsenault D; Denney-Koelsch E
Description
An account of the resource
SIGNIFICANCE:
Lethal fetal diagnoses are made in 2% of all pregnancies. The pregnancy experience is certainly changed for the parents who choose to continue the pregnancy with a known fetal diagnosis but little is known about how the psychological and developmental processes are altered.
METHODS:
This longitudinal phenomenological study of 16 mothers and 14 fathers/partners sought to learn the experiences and developmental needs of parents who continue their pregnancy despite the lethal diagnosis. The study was guided by Merleau-Ponty's philosophic view of embodiment. Interviews (N = 90) were conducted with mothers and fathers over time, from mid-pregnancy until 2-3 months post birth. Data analysis was iterative, through a minimum of two cycles of coding, theme identification, within- and cross-case analysis, and the writing of results.
RESULTS:
Despite individual differences, parents were quite consistent in sharing that their overall goal was to "Have no regrets" when all was said and done. Five stages of pregnancy were identified: Pre-diagnosis, Learning Diagnosis, Living with Diagnosis, Birth & Death, and Post Death. Developmental tasks of pregnancy that emerged were 1) Navigating Relationships, 2) Comprehending Implication of the Condition, 3) Revising Goals of Pregnancy, 4) Making the Most of Time with Baby, 5) Preparing for Birth and Inevitable Death, 6) Advocating for Baby with Integrity, and 7) Adjusting to Life in Absence of Baby. Prognostic certainty was found to be highly influential in parents' progression through developmental tasks.
CONCLUSION:
The framework of parents' pregnancy experiences with lethal fetal diagnosis that emerged can serve as a useful guide for providers who care for families, especially in perinatal palliative care. Providing patient-centered care that is matched to the stage and developmental tasks of these families may lead to improved care and greater parent satisfaction.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.socscimed.2016.02.033
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
Adult
Choice Behavior
Côté-Arsenault D
Denney-Koelsch E
Developmental Task
Emotions
Female
Fetal Diseases/diagnosis
Fetal Diseases/mortality
Humans
Infant
Lethal Fetal Diagnosis
Longitudinal
Longitudinal Studies
Male
March 2016 List
Middle Aged
Needs Assessment
Palliative Care
Parents/psychology
Perinatal Care
Perinatal Palliative Care
Phenomenology
Pregnancy
Prenatal Diagnosis
Prenatal Diagnosis/psychology
Qualitative Research
Social science & medicine
Usa
Young Adult
-
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
March 2023 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
March List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2022-HUNC.5" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.5</a>
Dublin Core
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Title
A name given to the resource
“It’s brilliant! It’s working! It’s needed!” A Hospice Short Break Innovation for Young Adults
Publisher
An entity responsible for making the resource available
BMJ Supportive and Palliative Care
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; Adult; Child; clinical article; conference abstract; drug withdrawal; Female; health care delivery; Hospice; Human; human experiment; interview; learning; Male; outcome assessment; Palliative Therapy; positive feedback; questionnaire; sibling; trust; young adult
Creator
An entity primarily responsible for making the resource
Finlinson H; Spathis A
Description
An account of the resource
Background More young adults with life-limiting conditions are surviving into adulthood needing adult palliative care (Gibson- Smith, Jarvis, Norman et al., 2021). The evidence on appropriate service models is sparse (Clark & Fasciano, 2015. Am J Hosp Palliat Med. 31: 101). Adult hospices report lack of competence and confidence in young adult complex care needs (Knighting, Bray, Downing, et al., 2018. J Adv Nurs. May 6). Loss of children's hospice short break provision after transition has been described by families as like 'falling off a cliff edge' (Knighting, Pilkington, Noyes, et al., 2021. Health Serv Deliv Res. 9, 6). There is a lack of equivalent provision in adult services (Together for Short Lives, 2015). To address unmet need, a pilot residential short break service in an adult hospice was co-produced and evaluated with families to determine future provision. Aims With the aim of facilitating future service optimisation the service evaluation had the following objectives: a) to identify the outcomes and benefits; b) to enable learning; c) to explore staff experiences, training and support needs; d) to scope the financial and service delivery implications. Methods A service evaluation of the pilot (delivered May 2019-March 2020,) including process data and feedback gathered using semi-structured questions via questionnaires, interviews and focus groups with young adults, siblings, parent/ guardians and staff. Results Sixty short breaks delivered, accessed by 15 young adults >18 years and their families. Evaluation participants: 3 young adults, 6 siblings, 10 parent/guardians, 11 staff. Highly positive feedback with no withdrawals from the pilot. Triangulated themes: a) social and developmental benefits for young adults; b) respite benefits for families; c) achieving parents' trust, d) ability of adult hospice to meet complex care needs; e) positive staff experiences; f) identified areas for service improvement. Conclusion Persuasive evidence from the evaluation resulted in the service being commissioned. The report offers recommendations for adult hospices aspiring to develop young adult palliative care services. How innovative or of interest is the abstract? To our knowledge this is the first young adult short break service in a UK adult hospice.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/spcare-2022-HUNC.5" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.5</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
Adult
BMJ Supportive and Palliative Care
Child
Clinical Article
conference abstract
Drug Withdrawal
Female
Finlinson H
Health Care Delivery
Hospice
Human
Human Experiment
Interview
Learning
Male
March List 2023
outcome assessment
Palliative Therapy
positive feedback
Questionnaire
Sibling
Spathis A
Trust
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.neurology.org/content/65/2/275.short" target="_blank" rel="noreferrer">http://www.neurology.org/content/65/2/275.short</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
A clinical rating scale for Batten disease Reliable and relevant for clinical trials
Publisher
An entity responsible for making the resource available
Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Prognosis; Treatment Outcome; Disease Progression; Severity of Illness Index; Longitudinal Studies; Predictive Value of Tests; adolescent; Preschool; Children W/SNI; Clinical Trials/standards; Neurologic Examination/methods/standards; Neuronal Ceroid-Lipofuscinoses/diagnosis/physiopathology/psychology; Neuropsychological Tests/standards; Personality Tests/standards
Creator
An entity primarily responsible for making the resource
Marshall FJ; de Blieck EA; Mink JW; Dure L; Adams H; Messing S; Rothberg PG; Levy Erika; McDonough T; DeYoung J; others
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
Adams H
Adolescent
Adult
Backlog
Child
Children W/SNI
Clinical Trials/standards
de Blieck EA
DeYoung J
Disease Progression
Dure L
Female
Humans
Journal Article
Levy Erika
Longitudinal Studies
Male
Marshall FJ
McDonough T
Messing S
Mink JW
Neurologic Examination/methods/standards
Neurology
Neuronal Ceroid-Lipofuscinoses/diagnosis/physiopathology/psychology
Neuropsychological Tests/standards
others
Personality Tests/standards
Predictive Value of Tests
Preschool
Prognosis
Rothberg PG
Severity Of Illness Index
Treatment Outcome
-
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/10.2190/x565-hw49-chr0-fyb4" target="_blank" rel="noreferrer">http://doi.org/10.2190/x565-hw49-chr0-fyb4</a>
Dublin Core
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Title
A name given to the resource
A comparison of adult bereavement in the death of a spouse, child, and parent
Publisher
An entity responsible for making the resource available
Omega
Date
A point or period of time associated with an event in the lifecycle of the resource
1980
Subject
The topic of the resource
Child; Grief; Adult; Parents; Death; bereavement
Creator
An entity primarily responsible for making the resource
Sanders CM
Description
An account of the resource
The Grief Experience Inventory (GEI) and the MMPI were used to assess bereavement reactions in 102 newly bereaved individuals; 107 controls were also assessed. Intensities of bereavement reactions were compared across three types of deaths experiences, i.e., spouse, child, and parent. Significantly higher intensities of grief were noted in parents surviving their child's death. A distinct number of physiological symptoms were noted in the bereaved group as compared to controls. Frequent church attenders were more likely to respond with higher optimism and social desirability but more repression of bereavement responses than were less frequent church attenders. Income did not appear to contribute negatively to bereavement itself but rather to the constellation of debilitating variables which surrounds those with low income. There were no differences in bereavement intensities between those who survived a chronic-illness death as compared with sudden death situations.
1980
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2190/x565-hw49-chr0-fyb4" target="_blank" rel="noreferrer">10.2190/x565-hw49-chr0-fyb4</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
1980
Adult
Backlog
Bereavement
Child
Death
Grief
Journal Article
Omega
Parents
Sanders CM
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1186/s13023-015-0379-6" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s13023-015-0379-6</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
A cross-sectional controlled developmental study of neuropsychological functions in patients with glutaric aciduria type i
Publisher
An entity responsible for making the resource available
Orphanet Journal of Rare Diseases
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
adolescent; cognition; cross sectional study; Dystonia; metabolic disorder; human; article; child; female; male; controlled study; adult; clinical article; dystonia/di [Diagnosis]; Barry Albright Dystonia Scale; cognitive development; Cognitive development; continuous performance test; enzyme deficiency; glutaric aciduria type I; Glutaric aciduria type I; Information processing; motor dysfunction; motor performance; neurologic disease assessment; newborn screening; response time; visual memory; visuomotor coordination; working memory; tone and motor problems; Glutaric acidemia type I; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Boy N; Heringer J; Haege G; Glahn E M; Hoffmann G F; Garbade S F; Kolker S; Burgard P
Description
An account of the resource
Background: Glutaric aciduria type I (GA-I) is an inherited metabolic disease due to deficiency of glutaryl-CoA dehydrogenase (GCDH). Cognitive functions are generally thought to be spared, but have not yet been studied in detail. Methods: Thirty patients detected by newborn screening (n = 13), high-risk screening (n = 3) or targeted metabolic testing (n = 14) were studied for simple reaction time (SRT), continuous performance (CP), visual working memory (VWM), visual-motor coordination (Tracking) and visual search (VS). Dystonia (n = 13 patients) was categorized using the Barry-Albright-Dystonia Scale (BADS). Patients were compared with 196 healthy controls. Developmental functions of cognitive performances were analysed using a negative exponential function model. Results: BADS scores correlated with speed tests but not with tests measuring stability or higher cognitive functions without time constraints. Developmental functions of GA-I patients significantly differed from controls for SRT and VS but not for VWM and showed obvious trends for CP and Tracking. Dystonic patients were slower in SRT and CP but reached their asymptote of performance similar to asymptomatic patients and controls in all tests. Asymptomatic patients did not differ from controls, except showing significantly better results in Tracking and a trend for slower reactions in visual search. Data across all age groups of patients and controls fitted well to a model of negative exponential development. Conclusions: Dystonic patients predominantly showed motor speed impairment, whereas performance improved with higher cognitive load. Patients without motor symptoms did not differ from controls. Developmental functions of cognitive performances were similar in patients and controls. Performance in tests with higher cognitive demand might be preserved in GA-I, even in patients with striatal degeneration. Copyright © 2015 Boy et al.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s13023-015-0379-6" target="_blank" rel="noreferrer noopener">10.1186/s13023-015-0379-6</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).
2015
Adolescent
Adult
Article
Barry Albright Dystonia Scale
Boy N
Burgard P
characteristics
Child
Clinical Article
Cognition
cognitive development
continuous performance test
Controlled Study
Cross Sectional Study
Dystonia
dystonia/di [Diagnosis]
enzyme deficiency
Female
Garbade S F
Glahn E M
Glutaric acidemia type I
glutaric aciduria type I
Haege G
Heringer J
Hoffmann G F
Human
Information Processing
Kolker S
Male
Metabolic Disorder
motor dysfunction
motor performance
neurologic disease assessment
newborn screening
Orphanet Journal Of Rare Diseases
response time
tone and motor problems
Trajectory
visual memory
visuomotor coordination
working memory
-
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/10.1007/s00520-014-2178-3" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00520-014-2178-3</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
A cross-sectional study on prevalence of pain and breakthrough pain among an unselected group of outpatients in a tertiary cancer clinic
Publisher
An entity responsible for making the resource available
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Cross-Sectional Studies; Female; Humans; Male; Young Adult; Neoplasms; Pain Measurement; Cohort Studies; Adult; Prevalence; Aged; Middle Aged; Comorbidity; Ambulatory Care Facilities; Breakthrough Pain; Norway; Outpatients
Creator
An entity primarily responsible for making the resource
Raj Sunil X; Thronaes M; Brunelli C; Hjermstad MJ; Klepstad P; Kaasa S
Description
An account of the resource
PURPOSE: Systematic knowledge about the prevalence and the treatment effects of cancer pain in patients attending a general oncology outpatient department is limited. The purpose of this study was to investigate the prevalence of pain in a large representative cohort of patients attending a general oncology outpatient department in order to guide further screening, classification, and treatment of pain. MATERIAL AND METHODS: A cross-sectional study among patients visiting the outpatient clinic with histologically verified cancer, age≥18 years, adequate cognitive function, and no surgical procedures last 24 h were included. Pain was assessed by the Brief Pain Inventory and the Alberta Breakthrough Pain Assessment Tool. RESULTS: Three hundred five patients were included. The mean age was 60 years, 94% had a WHO performance status of 0-1 and 59% received oncological treatment with a curative intent. The mean score for average pain last 24 h (numerical rating scale, 0-10) and current pain was 1.84 and 1.08, respectively. Twenty-two percent reported pain score of ≥4 as their average pain in the previous 24 h. Twenty-one percent reported breakthrough pain (BTP). In multivariate analyses, sleep, BTP, age, treatment intent, and comorbidity was significantly associated with mean average pain in the previous 24 h and explained 29% of the variability of average pain in the previous 24 h. CONCLUSION: Of the patients at an oncology outpatient clinic, 22% reported clinically significant pain. These findings indicate that all patients are candidates to be screened for pain and, if present, a more detailed pain diagnosis should be established before any interventions can be recommended.
2014-07
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00520-014-2178-3" target="_blank" rel="noreferrer">10.1007/s00520-014-2178-3</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
2014
Adolescent
Adult
Aged
Ambulatory Care Facilities
Backlog
Breakthrough Pain
Brunelli C
Cohort Studies
Comorbidity
Cross-sectional Studies
Female
Hjermstad MJ
Humans
Journal Article
Kaasa S
Klepstad P
Male
Middle Aged
Neoplasms
Norway
Outpatients
Pain Measurement
Prevalence
Raj Sunil X
Supportive Care In Cancer : Official Journal Of The Multinational Association Of Supportive Care In Cancer
Thronaes M
Young Adult
-
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 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
September 2019 List
URL Address
<a href="http://doi.org/10.1007/s11845-019-02054-z" target="_blank" rel="noreferrer noopener">http://doi.org/10.1007/s11845-019-02054-z</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
A cross-sectional survey of services for young adults with life-limiting conditions making the transition from children's to adult services in Ireland
Publisher
An entity responsible for making the resource available
Irish Journal of Medical Science.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; article; child; female; human; male; human experiment; organization; young adult; questionnaire; Northern Ireland
Creator
An entity primarily responsible for making the resource
Kerr H; Price J; O'Halloran P
Description
An account of the resource
Background: Increasing numbers of young adults with life-limiting conditions are living into adulthood and consequently making the transition from children's to adult services. A poorly planned transition is associated with adverse outcomes such as non-adherence to treatment and loss to follow-up, together with negative social and emotional outcomes. However, there is little descriptive data on how organisations are currently managing transition.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11845-019-02054-z" target="_blank" rel="noreferrer noopener">10.1007/s11845-019-02054-z</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
Adult
Article
Child
Female
Human
Human Experiment
Irish Journal of Medical Science.
Kerr H
Male
Northern Ireland
O'Halloran P
Organization
Price J
Questionnaire
September 2019 List
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1038/sj.npp.1301295" target="_blank" rel="noreferrer">http://doi.org/10.1038/sj.npp.1301295</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
A D2 antagonist enhances the rewarding and priming effects of a gambling episode in pathological gamblers.
Publisher
An entity responsible for making the resource available
Neuropsychopharmacology
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Male; Pain Measurement; Adult; Middle Aged; Semantics; Analysis of Variance; Motivation; Double-Blind Method; IM; Psychiatric Status Rating Scales; Neuropsychological Tests; Blood Pressure/de [Drug Effects]; Dopamine Antagonists/ad [Administration & Dosage]; Dopamine Antagonists/ae [Adverse Effects]; Gambling/px [Psychology]; Haloperidol/ad [Administration & Dosage]; Haloperidol/ae [Adverse Effects]; Reaction Time/de [Drug Effects]; Reward
Creator
An entity primarily responsible for making the resource
Zack M; Poulos CX
Description
An account of the resource
Previous research indicated shared neurochemical substrates for gambling and psychostimulant reward. This suggests that dopamine substrates may directly govern the reinforcement process in pathological gambling. To investigate this issue, the present study assessed the effects of the relatively selective dopamine D2 antagonist, haloperidol (3 mg, oral) on responses to actual gambling (15 min on a slot machine) in 20 non-comorbid pathological gamblers and 18 non-gambler controls in a placebo-controlled, double-blind, counterbalanced design. In gamblers, haloperidol significantly increased self-reported rewarding effects of gambling, post-game priming of desire to gamble, facilitation of reading speed to Gambling words, and gambling-induced elevation in blood pressure. In controls, haloperidol augmented gambling-induced elevation in blood pressure, but had no effect on other indices. The findings provide direct experimental evidence that the D2 substrate modulates gambling reinforcement in pathological gamblers.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/sj.npp.1301295" target="_blank" rel="noreferrer">10.1038/sj.npp.1301295</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
2007
Adult
Analysis of Variance
Backlog
Blood Pressure/de [Drug Effects]
Dopamine Antagonists/ad [Administration & Dosage]
Dopamine Antagonists/ae [Adverse Effects]
Double-Blind Method
Female
Gambling/px [Psychology]
Haloperidol/ad [Administration & Dosage]
Haloperidol/ae [Adverse Effects]
Humans
IM
Journal Article
Male
Middle Aged
Motivation
Neuropsychological Tests
Neuropsychopharmacology
Pain Measurement
Poulos CX
Psychiatric Status Rating Scales
Reaction Time/de [Drug Effects]
Reward
Semantics
Zack 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/10.1016/0885-3924(92)90101-m" target="_blank" rel="noreferrer">http://doi.org/10.1016/0885-3924(92)90101-m</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
A double-blind, crossover trial of intravenous clodronate in metastatic bone pain
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
1992
Subject
The topic of the resource
Female; Humans; Male; Pain Measurement; Adult; Aged; Middle Aged; Double-Blind Method; 80 and over; Infusions; Intravenous; Clodronate; Clodronic Acid/administration & dosage/therapeutic use; Bone Neoplasms/physiopathology/secondary; Pain/diagnosis/drug therapy/etiology
Creator
An entity primarily responsible for making the resource
Ernst DS; MacDonald RN; Paterson AH; Jensen J; Brasher P; Bruera E
Description
An account of the resource
After a baseline symptom and laboratory assessment, 24 patients with metastatic bone disease and pain were randomized to receive either a 4-hr intravenous infusion of 2-dichloromethylene bisphosphonate (Cl2MDP), 600 mg in 500 mL of normal saline, or a 4-hr placebo infusion, 500 mL of normal saline. The administration was double blind. After 1 wk, the assessment was repeated and the patients were crossed over to the alternate treatment. After 1 more wk, a final assessment and blinded choice by the patient and investigator took place. Of the 21 evaluable patients, 12 (57%) chose the Cl2MDP and 4 (19%) chose the placebo; 5 (24%) patients did not have a specific preference (p = NS). The investigator chose the Cl2MDP in 14 (67%) cases, placebo in 6 (29%) cases and was unable to discern a difference in 1 (5%) case (p less than 0.05). The patients and investigator made similar selections in 16 (76%) instances. On the visual analogue scale assessments, a significant decrease in pain scores was observed following the Cl2MDP infusion (p less than 0.01) and an increase in activity scores was also demonstrated (p less than 0.01). No significant difference in the daily oral morphine equivalent analgesic requirement was demonstrated for either arm. No difference in clinical and laboratory parameters of toxicity was evident between the placebo and Cl2MDP arms of the trial. Our preliminary findings suggest that Cl2MDP is safe, and has analgesic properties that may prove to be useful in the management of metastatic bone pain.
1992
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/0885-3924(92)90101-m" target="_blank" rel="noreferrer">10.1016/0885-3924(92)90101-m</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
1992
80 And Over
Adult
Aged
Backlog
Bone Neoplasms/physiopathology/secondary
Brasher P
Bruera E
Clodronate
Clodronic Acid/administration & dosage/therapeutic use
Double-Blind Method
Ernst DS
Female
Humans
Infusions
Intravenous
Jensen J
Journal Article
Journal of Pain and Symptom Management
MacDonald RN
Male
Middle Aged
Pain Measurement
Pain/diagnosis/drug therapy/etiology
Paterson AH
-
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/hrt.80.3.292" target="_blank" rel="noreferrer">http://doi.org/10.1136/hrt.80.3.292</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
A follow up study of myocardial involvement in patients with mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS)
Publisher
An entity responsible for making the resource available
Heart (british Cardiac Society)
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Follow-Up Studies; adolescent; Q3 Literature Search; Hypertrophy; Echocardiography; Electrocardiography; Left Ventricular/physiopathology/ultrasonography; MELAS Syndrome/physiopathology/ultrasonography; Stroke Volume
Creator
An entity primarily responsible for making the resource
Okajima Y; Tanabe Y; Takayanagi M; Aotsuka H
Description
An account of the resource
OBJECTIVE: To investigate cardiac function in patients with mitochondrial encephalomyopathy, lactic acidosis, and stroke-like episodes (MELAS) and clarify the clinical features of cardiomyopathy in MELAS. PATIENTS: 11 consecutive patients with MELAS (mean age at initial examination 11.3 years, range 4 to 16 years) were enrolled in the study. Six were followed for more than five years. RESULTS: On echocardiographic examination, three patients showed increased left ventricular end diastolic posterior wall thickness (LVPWTd), exceeding 140% of the normal value. Four patients, including these three, had an ejection fraction of less than 50%, and two also had increased left ventricular end diastolic volume (LVEDV) exceeding 140% of the normal value (%N). The LVPWTd%N was correlated positively with the LVEDV%N (R = 0.669, p < 0.05) and negatively with the ejection fraction (R = -0.6701, p < 0.05). One patient died of heart failure aged 22 years. CONCLUSIONS: The cardiomyopathy in MELAS is characterised by an abnormally thick left ventricular wall with progressive dilatation and poor left ventricular contraction developing over several years, indicating hypertrophic cardiomyopathy advancing to dilated cardiomyopathy.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/hrt.80.3.292" target="_blank" rel="noreferrer">10.1136/hrt.80.3.292</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
1998
Adolescent
Adult
Aotsuka H
Backlog
Child
Echocardiography
Electrocardiography
Female
Follow-up Studies
Heart (british Cardiac Society)
Humans
Hypertrophy
Journal Article
Left Ventricular/physiopathology/ultrasonography
Male
MELAS Syndrome/physiopathology/ultrasonography
Okajima Y
Q3 Scoping Review Results
Stroke Volume
Takayanagi M
Tanabe Y
-
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
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
Oncology 2017 List
URL Address
<a href="http://doi.org/10.1016/j.ejon.2016.01.005" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejon.2016.01.005</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
A gap between the intention of the Swedish law and interactions between nurses and children of patients in the field of palliative oncology - The perspective of nurses
Publisher
An entity responsible for making the resource available
European Journal Of Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Attitude Of Health Personnel; Child Of Impaired Parents/lj [legislation & Jurisprudence]; Intention; Neoplasms/nu [nursing]; Professional-family Relations; Adolescent; Adult; Child; Hospice And Palliative Care Nursing; Humans; Oncology Nursing; Parents; Sweden
Creator
An entity primarily responsible for making the resource
Karidar H; Akesson H; Glasdam S
Description
An account of the resource
PURPOSE: Children who have a parent with incurable cancer are in a vulnerable situation and the Swedish law tries to protect them. This article aims to explore the interactions between nurses and children of patients with incurable cancer from the nurses' perspective. METHOD: Semi-structured interviews with nine nurses in palliative oncology in Southern Sweden. Latent content analysis was carried out, inspired by Lundmann and Graneheim. RESULTS: Parents are gatekeepers to the children's involvement and meetings with the healthcare professionals. Therefore the nurses were dependent on the parents for contact with their children. Additionally, nurses were subject to the structural frame of their working environment in terms of time, economy, resources and the medical logic ruling the priorities for nursing during their daily working day. The opportunities to pay attention to the children of patients were limited, despite good intentions, willingness and a favourable legal framework. Teenagers were regarded as a challenge, and per se they challenged the nurses' opportunities to gain control of the meetings and situations around the families. CONCLUSIONS: Often nurses did not see and acknowledge the children of the palliative patient. They knew that the children were there and that it was important that they were there, but they challenged the order in the working environment in relation to time-allocated tasks and working flow. In the working environment patients were prioritised over relatives. From the perspective of nurses, there is a gap between the intentions of the Swedish law and the interactions between nurses and children. Copyright _ 2016 Elsevier Ltd. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejon.2016.01.005" target="_blank" rel="noreferrer">10.1016/j.ejon.2016.01.005</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2016
Adolescent
Adult
Akesson H
Attitude Of Health Personnel
Child
Child Of Impaired Parents/lj [legislation & Jurisprudence]
European Journal Of Oncology Nursing
Glasdam S
Hospice And Palliative Care Nursing
Humans
Intention
Karidar H
Neoplasms/nu [nursing]
Oncology 2017 List
Oncology Nursing
Parents
Professional-family Relations
Sweden
-
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/10.2307/2136404" target="_blank" rel="noreferrer">http://doi.org/10.2307/2136404</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
A global measure of perceived stress.
Publisher
An entity responsible for making the resource available
Journal Of Health And Social Behavior
Date
A point or period of time associated with an event in the lifecycle of the resource
1983
Subject
The topic of the resource
Female; Humans; Male; Adult; Longitudinal Studies; Life Change Events; Psychometrics; Stress; Psychological; Students; Students/psychology; Tobacco Use Disorder/psychology; Affective Symptoms; Affective Symptoms/psychology; Psychological/diagnosis; Tobacco Use Disorder
Creator
An entity primarily responsible for making the resource
Cohen S; Kamarck T; Mermelstein R
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2307/2136404" target="_blank" rel="noreferrer">10.2307/2136404</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
1983
1983
Adult
Affective Symptoms
Affective Symptoms/psychology
Backlog
Cohen S
Female
Humans
Journal Article
Journal Of Health And Social Behavior
Kamarck T
Life Change Events
Longitudinal Studies
Male
Mermelstein R
Psychological
Psychological/diagnosis
Psychometrics
Stress
Students
Students/psychology
Tobacco Use Disorder
Tobacco Use Disorder/psychology
-
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/10.1007/s00431-005-1698-8" target="_blank" rel="noreferrer">http://doi.org/10.1007/s00431-005-1698-8</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
A literature review on off-label drug use in children
Publisher
An entity responsible for making the resource available
European Journal Of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Humans; infant; Adult; Age Factors; Hospitals; Prescriptions; adolescent; Preschool; infant; Newborn; Clodronate; Community Health Services/statistics & numerical data; Drug Labeling/statistics & numerical data; Drug/statistics & numerical data; Legislation; Pediatric/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Pandolfini C; Bonati M
Description
An account of the resource
The aim was to compare results of studies performed in different settings worldwide and identify common therapeutic areas to allow for focused interventions, because off-label drug use can be a measure of the lack of knowledge concerning paediatric treatments. A secondary objective was to provide a brief review of efforts to date. A literature review of articles on off-label and unlicensed drug use in children involving general prescription samples was performed using Medline and Embase. In all, 30 studies from 1985-2004 were included. Eleven involved paediatric hospital wards, seven neonatal hospital wards, and 12 the community setting. The off-label and unlicensed classification methods varied, making results difficult to compare. In general, off-label/unlicensed prescription rates ranged from 11%-80%, and higher rates were found in younger versus older patients and in the hospital versus community settings. On the paediatric hospital wards, off-label/unlicensed prescriptions ranged from 16%-62% and most often concerned acetaminophen, cisapride, chloral hydrate, and salbutamol. In the neonatal wards, rates ranged from 55%-80% and often involved caffeine. In the community setting, rates ranged from 11%-37% and the most commonly implicated drugs were salbutamol and amoxicillin. Conclusion:A lack of harmonization between the evidence, the information available to doctors, and its use in clinical practice exists and this is part of the reason off-label therapies are so common. Attempts have been made to improve knowledge concerning paediatric treatments, but more focused interventions are needed, also taking into consideration this lack of harmonization.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s00431-005-1698-8" target="_blank" rel="noreferrer">10.1007/s00431-005-1698-8</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
2005
Adolescent
Adult
Age Factors
Backlog
Bonati M
Child
Clodronate
Community Health Services/statistics & numerical data
Drug Labeling/statistics & numerical data
Drug/statistics & numerical data
European Journal of Pediatrics
Hospitals
Humans
Infant
Journal Article
Legislation
Newborn
Pandolfini C
Pediatric/statistics & Numerical Data
Preschool
Prescriptions
-
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/10.1017/S147895150999068X" target="_blank" rel="noreferrer">http://doi.org/10.1017/S147895150999068X</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
A longitudinal method of teaching pediatric palliative care to interns: preliminary findings regarding changes in interns' comfort level
Publisher
An entity responsible for making the resource available
Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Female; Humans; Male; Young Adult; Adult; Attitude of Health Personnel; Questionnaires; Attitude to Death; Professional-Family Relations; Longitudinal Studies; Internship and Residency; Professional-Patient Relations; Professional Competence; Pediatrics/education; Palliative Care/methods; Curriculum/standards; Documentation/standards; Teaching/methods
Creator
An entity primarily responsible for making the resource
Yazdani S; Evan E; Roubinov D; Chung PJ; Zeltzer L
Description
An account of the resource
OBJECTIVE: A longitudinal pediatric palliative care curriculum was introduced into the pediatric residency program at the University of California, Los Angeles. The present study explores the possible effects of this curriculum on the interns' self-assessed comfort levels regarding caring for children with life-threatening conditions. METHODS: A newly created assessment tool was administered to interns in order to rate their comfort regarding pediatric palliative care at the beginning and conclusion of their intern year. RESULTS: Twenty-two of the 29 interns completed this survey. Baseline data indicated 55% of the interns had some experience with taking care of a dying pediatric patient during their medical school training, and 79% indicated that they had taken care of a dying adult. Only 7% of the interns felt adequately prepared to deal with death and dying, but all interns indicated interest in further learning about pediatric palliative care. Comparison of the overall comfort levels of the 22 responding residents before and after the first year of training in 20 different related tasks demonstrated a significant self-assessed improvement of comfort in seven areas. There was no increase in self-reported comfort in communication related to palliative care. SIGNIFICANCE OF RESULTS: Residents indicated increased comfort in some areas of pediatric palliative care after the first year of their training. The underlying cause of this increased comfort is unclear at this time. The overall effect of longitudinal palliative care curricula on residents' level of comfort in caring for this population deserves further assessment.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S147895150999068X" target="_blank" rel="noreferrer">10.1017/S147895150999068X</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
2010
Adult
Attitude Of Health Personnel
Attitude To Death
Backlog
Chung PJ
Curriculum/standards
Documentation/standards
Evan E
Female
Humans
Internship And Residency
Journal Article
Longitudinal Studies
Male
Palliative & Supportive Care
Palliative Care/methods
Pediatrics/education
Professional Competence
Professional-family Relations
Professional-patient Relations
Questionnaires
Roubinov D
Teaching/methods
Yazdani S
Young Adult
Zeltzer 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
July 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
A Longitudinal, Randomized, Controlled Trial Of Advance Care Planning For Teens With Cancer: Anxiety, Depression, Quality Of Life, Advance Directives, Spirituality
Publisher
An entity responsible for making the resource available
Journal Of Adolescent Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Adolescent; Adult; Advance Care Planning/statistics & Numerical Data; Advance Directives/psychology; Advance Directives/statistics & Numerical Data; Anxiety/complications; Anxiety/psychology; Depression/complications; Depression/psychology; Family; Feasibility Studies; Female; Follow-up Studies; Humans; Longitudinal Studies; Male; Neoplasms/complications; Neoplasms/psychology; Patient Satisfaction/statistics & Numerical Data; Quality Of Life/psychology; Spirituality; Surveys And Questionnaires; United States; Young Adult
Adolescent; Advance Care Planning; Advance Directive; African-american; Cancer; Communication; Decision-making; End Of Life; Family Intervention; Pediatric Palliative Care
Creator
An entity primarily responsible for making the resource
M.E. Lyon; Wang J
Description
An account of the resource
To test the feasibility, acceptability and safety of a pediatric advance care planning intervention, Family-Centered Advance Care Planning for Teens With Cancer (FACE-TC).
METHODS:
Adolescent (age 14-20 years)/family dyads (N = 30) with a cancer diagnosis participated in a two-armed, randomized, controlled trial. Exclusion criteria included severe depression and impaired mental status. Acceptability was measured by the Satisfaction Questionnaire. General Estimating Equations models assessed the impact of FACE-TC on 3-month post-intervention outcomes as measured by the Pediatric Quality of Life Inventory 4.0 Generic Core Scale, the Pediatric Quality of Life Inventory 4.0 Cancer-Specific Module, the Beck Depression and Anxiety Inventories, the Spiritual Well-Being Scale of the Functional Assessment of Chronic Illness Therapy-IV, and advance directive completion.
RESULTS:
Acceptability was demonstrated with enrollment of 72% of eligible families, 100% attendance at all three sessions, 93% retention at 3-month post-intervention, and 100% data completion. Intervention families rated FACE-TC worthwhile (100%), whereas adolescents' ratings increased over time (65%-82%). Adolescents' anxiety decreased significantly from baseline to 3 months post-intervention in both groups (β = -5.6; p = .0212). Low depressive symptom scores and high quality of life scores were maintained by adolescents in both groups. Advance directives were located easily in medical records (100% of FACE-TC adolescents vs. no controls). Oncologists received electronic copies. Total Spirituality scores (β = 8.1; p = .0296) were significantly higher among FACE-TC adolescents versus controls. The FACE-TC adolescents endorsed the best time to bring up end-of-life decisions: 19% before being sick, 19% at diagnosis, none when first ill or hospitalized, 25% when dying, and 38% for all of the above.
CONCLUSIONS:
Family-Centered Advance Care Planning for Teens With Cancer demonstrated feasibility and acceptability. Courageous adolescents willingly participated in highly structured, in-depth pediatric advance care planning conversations safely.
Identifier
An unambiguous reference to the resource within a given context
DOI: 10.1016/j.jadohealth.2013.10.206
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).
2014
Adolescent
Adult
Advance Care Planning
Advance Care Planning/statistics & Numerical Data
Advance Directive
Advance Directives/psychology
Advance Directives/statistics & Numerical Data
African-american
Anxiety/complications
Anxiety/psychology
Cancer
Communication
Decision-making
Depression/complications
Depression/psychology
End Of Life
Family
Family Intervention
Feasibility Studies
Female
Follow-up Studies
Humans
Journal of Adolescent Health
July 2016 List
Longitudinal Studies
M.E. Lyon
Male
Neoplasms/complications
Neoplasms/psychology
Patient Satisfaction/statistics & Numerical Data
Pediatric Palliative Care
Quality Of Life/psychology
Spirituality
Surveys And Questionnaires
United States
Wang J
Young Adult
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1053/jpdn.2002.126711" target="_blank" rel="noreferrer">http://doi.org/10.1053/jpdn.2002.126711</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
A model for transition from pediatric to adult care in cystic fibrosis
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Female; Humans; Male; Adult; adolescent; Models; Adolescent Transitions; Cystic Fibrosis/therapy; PST - ppublish; Organizational; London; Continuity of Patient Care; Disease Management; AID - S0882596302000167 [pii]; CRDT- 2002/09/10 10:00; EDAT- 2002/09/10 10:00; MHDA- 2002/10/22 04:00
Creator
An entity primarily responsible for making the resource
Madge S; Bryon M
Description
An account of the resource
With improved medical technology, many chronic medical conditions of childhood are now recognized as conditions of childhood onset. Appropriate treatment of these conditions in the adult patient is required. The pediatric setting is not appropriate in terms of philosophy, service delivery, and relationship with the patient. To design a suitable transition protocol, a survey of teenage patients with cystic fibrosis was carried out and the process was discussed with the relevant clinicians. The results of the survey indicated that young people identified transition to an adult service as necessary and accepted, provided that good preparation is given from the pediatric setting. This article provides a detailed example of a model of transition for cystic fibrosis services to encourage practice and evaluation of provision.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1053/jpdn.2002.126711" target="_blank" rel="noreferrer">10.1053/jpdn.2002.126711</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
Adolescent
Adolescent Transitions
Adult
AID - S0882596302000167 [pii]
Backlog
Bryon M
Continuity Of Patient Care
CRDT- 2002/09/10 10:00
Cystic Fibrosis/therapy
Disease Management
EDAT- 2002/09/10 10:00
Female
Humans
Journal Article
Journal of Pediatric Nursing
London
Madge S
Male
MHDA- 2002/10/22 04:00
Models
Organizational
PST - ppublish
-
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/10.1097/HNP.0b013e318280f83c" target="_blank" rel="noreferrer">http://doi.org/10.1097/HNP.0b013e318280f83c</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
A mother's perspective: the power of holistic care for the terminally ill child
Publisher
An entity responsible for making the resource available
Holistic Nursing Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Humans; mothers; Terminal Care; Terminally Ill; Family; Adult; Mother-Child Relations; Life Change Events; Hospitals; Leukemia; Holistic Nursing; Altruism; Pediatric; Gift Giving
Creator
An entity primarily responsible for making the resource
Dolan P
Description
An account of the resource
This is the account of a mother who lived through the 5-year experience of watching her child fight and finally succumb to a genetic disorder. Lessons about caring practices and insights into the needs of patients and families are emphasized.
2013-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/HNP.0b013e318280f83c" target="_blank" rel="noreferrer">10.1097/HNP.0b013e318280f83c</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
2013
Adult
Altruism
Backlog
Child
Dolan P
Family
Gift Giving
Holistic Nursing
Holistic Nursing Practice
Hospitals
Humans
Journal Article
Leukemia
Life Change Events
Mother-child Relations
Mothers
Pediatric
Terminal Care
Terminally Ill
-
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/10.1080/09638280500304919" target="_blank" rel="noreferrer">http://doi.org/10.1080/09638280500304919</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
A multi-dimensional approach to the transition of children with developmental disabilities into young adulthood: the acquisition of adult social roles
Publisher
An entity responsible for making the resource available
Disability And Rehabilitation
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Adult; Logistic Models; Questionnaires; Social Adjustment; adolescent; Adolescent Transitions; Social Behavior; Disabled Persons/psychology; Georgia; Developmental Disabilities/psychology
Creator
An entity primarily responsible for making the resource
Van Naarden Braun K; Yeargin-Allsopp M; Lollar D
Description
An account of the resource
PURPOSE: To test the hypothesis that the difficulties young adults with developmental disabilities have in obtaining adult social roles are not inevitable consequences of their childhood impairment. We used the conceptual framework of the International Classification of Functioning, Disability, and Health to test this hypothesis. METHOD: We used a structured questionnaire to obtain information on the consequences of childhood impairment in young adulthood and to examine the relationship between impairment and acquisition of adult social roles. The sample (n = 635) came from the Metropolitan Atlanta Developmental Disabilities Follow-up Study of Young Adults, a population-based cohort of young adults aged 21 - 25 years identified at age 10 with childhood impairment. RESULTS: The results suggest that: (i) attaining adult social roles varies by impairment type and severity, (ii) experiencing activity limitations partially mediate the relationship between impairment and adult social roles, and (iii) attending postsecondary education increases the likelihood of attaining markers of adulthood. CONCLUSIONS: Intervention to reduce activity limitations and to develop strategies to increase attendance in postsecondary education may increase the likelihood for the acquisition of adult social roles among young adults with childhood impairment.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/09638280500304919" target="_blank" rel="noreferrer">10.1080/09638280500304919</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
2006
Adolescent
Adolescent Transitions
Adult
Backlog
Child
Cross-sectional Studies
Developmental Disabilities/psychology
Disability And Rehabilitation
Disabled Persons/psychology
Female
Georgia
Humans
Journal Article
Logistic Models
Lollar D
Male
Questionnaires
Social Adjustment
Social Behavior
Van Naarden Braun K
Yeargin-Allsopp 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
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/10.1177/1049909116660688" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049909116660688</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
A Multimodal Mindfulness Training to Address Mental Health Symptoms in Providers Who Care for and Interact With Children in Relation to End-of-Life Care
Publisher
An entity responsible for making the resource available
The American journal of hospice & palliative care
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Humans; Intensive Care Units; Intensive Care Units; Middle Aged; Female; Male; Adult; Aged; Pediatric; Neonatal; Terminal Care/px [Psychology]; Mental Health; Burnout; Health Personnel/px [Psychology]; Mindfulness/mt [Methods]; Clergy/px [Psychology]; Depression/px [Psychology]; Social Workers/px [Psychology]; Professional/px [Psychology]
Creator
An entity primarily responsible for making the resource
O'Mahony S; Gerhart J; Abrams I; Greene M; McFadden Rory; Tamizuddin S; Levy MM
Description
An account of the resource
AIM: Medical providers may face unique emotional challenges when confronted with the suffering of chronically ill, dying, and bereaved children. This study assessed the preliminary outcomes of participation in a group-based multimodal mindfulness training pilot designed to reduce symptoms of burnout and mental health symptoms in providers who interact with children in the context of end-of-life care., METHODS: A total of 13 medical providers who care for children facing life-threatening illness or bereaved children participated in a 9-session multimodal mindfulness session. Mental health symptoms and burnout were assessed prior to the program, at the program midpoint, and at the conclusion of the program., RESULTS: Participation in the pilot was associated with significant reductions in depressive and posttraumatic stress disorder (PTSD) symptoms among providers ( P < .05)., CONCLUSION: Mindfulness-based programs may help providers recognize and address symptoms of depression and PTSD. Additional research is needed to enhance access and uptake of programming among larger groups of participants.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1049909116660688" target="_blank" rel="noreferrer noopener">10.1177/1049909116660688</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).
2017
Abrams I
Adult
Aged
August 2018 List
Burnout
Clergy/px [Psychology]
Depression/px [Psychology]
Female
Gerhart J
Greene M
Health Personnel/px [psychology]
Humans
Intensive Care Units
Levy MM
Male
McFadden Rory
Mental Health
Middle Aged
Mindfulness/mt [Methods]
Neonatal
O'Mahony S
Pediatric
Professional/px [Psychology]
Social Workers/px [psychology]
Tamizuddin S
Terminal Care/px [psychology]
The American Journal of Hospice & Palliative 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
December 2018 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
December 2018 List
URL Address
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.1002/pbc.27455</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
A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
Publisher
An entity responsible for making the resource available
Pediatric Blood and Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
United States; death; education; palliative therapy; retrospective study; cancer patient; language; complication; malignant neoplasm; patient referral; conference abstract; medical record review; human; child; female; male; controlled study; adult; pediatric patient; child psychology; biological product; social care; speech
Creator
An entity primarily responsible for making the resource
Schneider N; Steinberg D; Karfunkle B
Description
An account of the resource
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study aims to identify how cultural and language factors may influence whether psychology is involved in a patient and family's care. Preliminary literature in adult-focused research suggests that a vast majority of those referred to psychology are English speaking. Design/Methods: The medical records of Pediatric patients who died from cancer or its complications over a consecutive 18 month-period were examined via retrospective chart review. Patients' demographic information was collected, along with information about whether their medical team requested a psychology consultation. Details about consultations and subsequent intervention were collected. Results: Eighty-nine charts were reviewed. Patients ranged from age 3 months to 25 years. Data indicated that non-English speaking families were referred to psychology at nearly half the rate of English-speaking families (i.e., 16% of patients as compared to 31% of patients). There did not appear to be any statistically significant differences between the referred and non-referred groups aside from the family's primary language. There was a wide range of when patients were referred (4-3168 days before death). Conclusions: Results indicate that, though the comprehensive biological-psychological-social care of children is widely recognized as important, there is a clear disparity in the services offered to families that speak languages other than English. Further research should be conducted to understand referral barriers and missed opportunities to utilize Pediatric psychology, particularly as hospitals in the United States continue to diversify. Finally, offering providers education about how to identify common psychological concerns, particularly in those hailing from different cultural backgrounds, may be particularly valuable in closing the identified referral gap; our poster will make culturally-informed recommendations for such a training.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
2018
Adult
biological product
Cancer Patient
Child
Child Psychology
Complication
conference abstract
Controlled Study
Death
December 2018 List
Education
Female
Human
Karfunkle B
Language
Male
Malignant Neoplasm
Medical Record Review
Palliative Therapy
Patient Referral
Pediatric Blood and Cancer
pediatric patient
Retrospective Study
Schneider N
Social Care
Speech
Steinberg D
United States
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1002/1097-0142(20010101)91:1%3C144::AID-CNCR19%3E3.0.CO" target="_blank" rel="noreferrer">http://doi.org/10.1002/1097-0142(20010101)91:1%3C144::AID-CNCR19%3E3.0.CO</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
A Phase I, open label, dose ranging trial of intravenous bolus zoledronic acid, a novel bisphosphonate, in cancer patients with metastatic bone disease
Publisher
An entity responsible for making the resource available
Cancer
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Female; Humans; Male; Adult; Aged; Middle Aged; Treatment Outcome; Non-U.S. Gov't; Research Support; Pain/etiology; Injections; Intravenous; Neoplasms/complications; Anorexia/chemically induced; Biological Markers/analysis; Bone Neoplasms/drug therapy/secondary; Bone Resorption; Constipation/chemically induced; Diphosphonates/administration & dosage/adverse effects/pharmacology; Fever/chemically induced; Imidazoles/administration & dosage/adverse effects/pharmacology; Nausea/chemically induced
Creator
An entity primarily responsible for making the resource
Berenson JR; Vescio R; Henick K; Nishikubo C; Rettig M; Swift RA; Conde F; Von Teichert JM
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/1097-0142(20010101)91:1%3C144::AID-CNCR19%3E3.0.CO" target="_blank" rel="noreferrer">10.1002/1097-0142(20010101)91:1%3C144::AID-CNCR19%3E3.0.CO</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
BACKGROUND: Bone metastases typically are associated with osteolytic bone destruction, resulting in bone pain, pathologic fractures, spinal cord compression, and hypercalcemia. Bisphosphonates are potent inhibitors of normal and pathologic bone resorption and represent a significant therapeutic improvement in the management of patients with lytic bone metastases. Zoledronic acid is a new-generation, highly potent, nitrogen-containing bisphosphonate that to the authors knowledge is the most potent inhibitor of bone resorption currently in clinical trials. The objectives of the current study were to assess the safety and tolerability of increasing doses of zoledronic acid and to determine its activity with respect to reducing biochemical markers of bone resorption in cancer patients with bone metastases. METHODS: Forty-four cancer patients with bone metastases or primary bone lesions were enrolled sequentially into 1 of 5 fixed ascending-dose treatment groups. Each patient received a single intravenous bolus injection of 1, 2, 4, 8, or 16 mg of zoledronic acid over 30-60 seconds. Patients were monitored for 8 weeks for the evaluation of clinical findings, adverse events, vital signs, electrocardiograms, markers of bone resorption, and urinary N-acetyl-beta-D-glucosaminidase. RESULTS: Zoledronic acid was safe and well tolerated at all dose levels tested. Commonly reported adverse events included bone pain, fever, anorexia, constipation, and nausea, which were experienced by a similar proportion of patients in each treatment group. Seven patients reported serious adverse events, none of which appeared to be related to the study drug. Zoledronic acid effectively suppressed biochemical markers of bone resorption, including the highly specific markers N-telopeptide and deoxypyridinoline, for up to 8 weeks in the 2-16-mg dose groups and for a shorter duration in the 1-mg group. CONCLUSIONS: In the current study, zoledronic acid was safe and well tolerated and demonstrated potent inhibition of bone resorption. The authors believe it may improve the treatment of metastatic bone disease.
2001
Adult
Aged
Anorexia/chemically induced
Backlog
Berenson JR
Biological Markers/analysis
Bone Neoplasms/drug therapy/secondary
Bone Resorption
Cancer
Conde F
Constipation/chemically induced
Diphosphonates/administration & dosage/adverse effects/pharmacology
Female
Fever/chemically induced
Henick K
Humans
Imidazoles/administration & dosage/adverse effects/pharmacology
Injections
Intravenous
Journal Article
Male
Middle Aged
Nausea/chemically induced
Neoplasms/complications
Nishikubo C
Non-U.S. Gov't
Pain/etiology
Research Support
Rettig M
Swift RA
Treatment Outcome
Vescio R
Von Teichert JM
-
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 2017 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
A Pilot Study Of The Effectiveness Of Home Teleconsultations In Paediatric Palliative Care
Publisher
An entity responsible for making the resource available
Journal Of Telemedicine & Telecare
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Subject
The topic of the resource
Caregivers/px [psychology]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Quality Of Life; Remote Consultation/ut [utilization]; Adult; Caregivers; Cohort Studies; Female; Health Services Accessibility; Humans; Male; Middle Aged; Outcome And Process Assessment (health Care); Palliative Care; Palliative Care/st [standards]; Patient Satisfaction; Pediatrics/st [standards]; Pilot Projects; Prospective Studies; Referral And Consultation; Rural Population
Creator
An entity primarily responsible for making the resource
Bradford N; Young J; Armfield NR; Bensink ME; Pedersen LA; Herbert A; Smith AC
Description
An account of the resource
We conducted a pilot study to investigate the effectiveness of a home telehealth service for paediatric palliative care consultations. Over a 10 week period, 14 of the 17 caregivers approached to be part of the study agreed to participate. Families were allocated, non-randomly, to a control group (usual care) or an intervention group (usual care with the addition of home telehealth consultations). The primary outcome measure was quality-of-life score. Caregivers were surveyed for up to 99 days following recruitment. A descriptive analysis of the quality-of-life data showed no differences between caregivers in the two groups. However, important lessons were learnt regarding factors which influence the success of studies in this population group, and the domains of caregiver quality-of-life that warrant intervention. Palliative care is complex, and multiple interventions and supports are required if care is to be managed at home. Home telehealth consultations are a feasible and acceptable means of facilitating a palliative care consultation which can reduce the burden on families at a distressing time.
Identifier
An unambiguous reference to the resource within a given context
10.1258/jtt.2012.gth103
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).
2012
Adult
Armfield NR
Bensink ME
Bradford N
Caregivers
Caregivers/px [psychology]
Cohort Studies
Female
Health Services Accessibility
Herbert A
Humans
Journal of Telemedicine & Telecare
Male
May 2017 List
Middle Aged
Outcome And Process Assessment (health Care)
Palliative Care
Palliative Care/mt [methods]
Palliative Care/st [standards]
Patient Satisfaction
Pedersen LA
Pediatrics/mt [methods]
Pediatrics/st [standards]
Pilot Projects
Prospective Studies
Quality Of Life
Referral And Consultation
Remote Consultation/ut [utilization]
Rural Population
Smith AC
Young 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/10.1542/peds.109.2.200" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.109.2.200</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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A prospective investigation into the epidemiology of in-hospital pediatric cardiopulmonary resuscitation using the international Utstein reporting style
Publisher
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Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Female; Humans; infant; Male; Survival Rate; Adult; Prospective Studies; Treatment Outcome; Hospitals; Emergency Service; adolescent; Preschool; infant; Chronic disease; Newborn; Pediatric/statistics & numerical data; Brazil/epidemiology; Cardiopulmonary Resuscitation/statistics & numerical data/utilization; Heart Arrest/mortality/therapy; Hospital/statistics & numerical data/utilization; Respiratory Insufficiency/mortality/therapy; Shock/mortality/therapy
Creator
An entity primarily responsible for making the resource
Reis AG; Nadkarni V; Perondi MB; Grisi S; Berg RA
Description
An account of the resource
OBJECTIVE: Data regarding pediatric in-hospital cardiopulmonary resuscitation (CPR) have been limited because of retrospective study designs, small sample sizes, and inconsistent definitions of cardiac arrest and CPR. The purpose of this study was to prospectively describe and evaluate pediatric in-hospital CPR with the international consensus-derived epidemiologic definitions from the Utstein guidelines. METHODS: All 129 in-hospital CPRs during 12 months at a 122-bed university children's hospital in Sao Paulo, Brazil, were described and evaluated using Utstein reporting guidelines. These guidelines include standardized descriptions of hospital variables, patient variables, arrest/event variables, and outcome variables. CPR was defined as chest compressions and assisted ventilation provided because of cardiac arrest or because of severe bradycardia with poor perfusion. Outcome variables included sustained return of spontaneous circulation, 24-hour survival, 30-day survival, 1-year survival, and neurologic status of survivors by the Pediatric Cerebral Performance Category Scale. RESULTS: Of the 6024 children admitted to the hospital, 176 (3%) had an episode that met the criteria for provision of CPR and 129 (2%) received CPR, 86 for clinical cardiac arrest and 43 for bradycardia with poor perfusion. Most of the children (71%) had preexisting chronic diseases. The most common precipitating causes were respiratory failure (61%) and shock (29%). The initial cardiac rhythm was asystole in 71 children (55%), pulseless electrical activity in 12 (9%), ventricular fibrillation in 1, and bradycardia with pulses and poor perfusion in 43 (33%). Eighty-three children (64%) attained sustained return of spontaneous circulation (>20 minutes), 43 (33%) were alive at 24 hours, 24 (19%) were alive at 30 days, and 19 (15%) were alive at 1 year. Although many factors correlated with 24-hour survival, multivariate logistic regression analysis revealed independent association of 24-hour survival with respiratory failure as the precipitating cause (odds ratio [OR]: 4.92; 95% confidence interval [CI]: 1.73-14.0), bradycardia with pulses as the initial event (OR: 2.68; 95% CI: 1.01-7.1), and shorter duration of CPR (OR: 0.92; 95% CI: 0.89-0.96 for each elapsed minute). Similarly, 30-day survival was independently associated with respiratory failure as the precipitating cause and shorter duration of CPR. Thirty-day survival decreased by 5% with each elapsed minute of CPR. Nineteen (91%) of the 21 survivors to hospital discharge and 16 (83%) of the 19 1-year survivors had no demonstrable long-term change in neurologic function from their pre-CPR status. CONCLUSIONS: During this study, CPR was uncommon but not rare. Respiratory failure was the most common precipitating cause, followed by shock. Preexisting chronic diseases were prevalent among these children. Asystole was the most common initial cardiac rhythm, and bradycardia with pulses and poor perfusion was the second most common. Ventricular fibrillation was rare, but children with acute cardiac diseases, such as cardiac surgery and acute cardiomyopathies, were not admitted to this children's hospital. CPR was effective: nearly two thirds of these children were initially successfully resuscitated, and one third were alive at 24 hours compared with imminent death without CPR and advanced life support. Nevertheless, survival progressively decreased over time, generally as a result of the underlying disease process. One-year survival was 15%. Importantly, most of these survivors had no demonstrable change in gross neurologic function from their pre-CPR status.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.109.2.200" target="_blank" rel="noreferrer">10.1542/peds.109.2.200</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
Adolescent
Adult
Backlog
Berg RA
Brazil/epidemiology
Cardiopulmonary Resuscitation/statistics & numerical data/utilization
Child
Chronic Disease
Emergency Service
Female
Grisi S
Heart Arrest/mortality/therapy
Hospital/statistics & numerical data/utilization
Hospitals
Humans
Infant
Journal Article
Male
Nadkarni V
Newborn
Pediatric/statistics & Numerical Data
Pediatrics
Perondi MB
Preschool
Prospective Studies
Reis AG
Respiratory Insufficiency/mortality/therapy
Shock/mortality/therapy
Survival Rate
Treatment Outcome
-
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 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07853890.2023.2268093</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
A psychological experience assessment protocol of parent caregivers in paediatric palliative care
Publisher
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Annals of 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; adult; article; human; social support; palliative therapy; clinical article; caregiver; parent; Portugal; United Kingdom; therapy; questionnaire; coping behavior; semi structured interview; vulnerability; psychologic assessment; Coping Strategy Questionnaire
Creator
An entity primarily responsible for making the resource
Nogueira AJ; Ribeiro MT
Description
An account of the resource
Background: Paediatric Palliative Care (PPC) has undergone rapid growth in Portugal, where there are over 7800 children with life-limiting conditions. This is a complex experience for families due to the ongoing threat and vulnerability caused by the emergence of an illness, and therefore several studies have tended to focus on the adaptation of parent caregivers. The aim of the present study is to present a psychological experience assessment protocol of parents in PPC. Methods: It consists of a socio-demographic and clinical questionnaire and a semi-structured interview based on an incomplete narrative deriving from the Unwanted Guest Metaphor. Results: On the basis of the latter, 10 dimensions of the experience in the parental subsystem were explored through parents' own perspective, namely: confrontation with the diagnosis; representation of the illness; emotional impact; day-to-day challenges; family impact; resources and social support; coping strategies; posttraumatic growth; representation of the sick child; and future perspectives. Discussion: The protocol can be used in person or remotely and its application enables the identification of specific needs and the establishment of psychotherapeutic goals and strategies for each family, thus enhancing their well-being and resilience, from an eco-systemic perspective. Conclusions: The protocol is presented in detail and its importance in the context of research and systemic intervention in PPC is discussed.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07853890.2023.2268093" target="_blank" rel="noreferrer noopener">10.1080/07853890.2023.2268093</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
Adult
Annals Of Medicine
Article
Caregiver
Child
Clinical Article
Coping Behavior
Coping Strategy Questionnaire
February List 2024
Human
Nogueira AJ
Palliative Therapy
Parent
Portugal
psychologic assessment
Questionnaire
Ribeiro MT
Semi Structured Interview
Social Support
Therapy
United Kingdom
VULNERABILITY
-
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 2017 List
URL Address
<a href="http://doi.org/10.1177/1359104507080981" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1359104507080981</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
A Qualitative Investigation of Fathers' Experiences of Looking After a Child with a Life-Limiting Illness, In Process and In Retrospect
Publisher
An entity responsible for making the resource available
Clinical Child Psychology And Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Child; Female; Humans; Male; Grief; Adult; Attitude to Death; Professional-Family Relations; Life Change Events; Adaptation; Psychological; Caregivers/psychology; Palliative Care/psychology; social support; Gender Identity; Interview; Chronic Disease/psychology; Terminal Care/psychology; Marriage/psychology; Home Nursing/psychology; Fathers/psychology; father experience; Father-Child Relations
Creator
An entity primarily responsible for making the resource
Ware J; Raval H
Description
An account of the resource
Child life-limiting illnesses are those from which there is no reasonable hope of cure and from which children will die. Only recently have these illnesses been recognized as a discrete category and thus relatively little research has focused specifically upon this group of children and their families. This study utilized qualitative methods to investigate the experience of fathers, a group who are often under-represented in child illness research. The research aim was to gain an understanding of fathers' experiences of having a child with a life-limiting illness, its impact upon them, and their perceptions of service provision. The data from eight interviews was analysed using Interpretative Phenomenological Analysis. Four main themes emerged highlighting the fathers' feeling that their world had been turned upside down, how they lived with the knowledge their child would die, how men perceive themselves as different from women, and the fathers' wish to contribute to changing and improving how other fathers might cope with a child with a life-limiting illness. The results are discussed particularly in relation to gender issues. Various implications for clinical practice and service provision are considered. Suggestions are also made for future research.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1359104507080981" target="_blank" rel="noreferrer noopener">10.1177/1359104507080981</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
2007
Adaptation
Adult
Attitude To Death
Backlog
Caregivers/psychology
Child
Chronic Disease/psychology
Clinical Child Psychology And Psychiatry
father experience
Father-child Relations
Fathers/psychology
Female
Gender Identity
Grief
Home Nursing/psychology
Humans
Interview
Journal Article
Life Change Events
Male
Marriage/psychology
Palliative Care/psychology
Professional-family Relations
Psychological
Raval H
Social Support
Terminal Care/psychology
Ware J
-
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 2024 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 List 2024
URL Address
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/JPN.0000000000000780</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
A Qualitative Study of Parents' Experiences of Bonding in End-of-Life Care in a Neonatal Intensive Care Unit
Publisher
An entity responsible for making the resource available
Journal of Perinatal & Neonatal Nursing
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; diagnosis; terminal care; adult; article; human; newborn; clinical article; interview; content analysis; parent; pilot study; qualitative research; newborn intensive care; neonatal intensive care unit; health care personnel; infant; decision making; powerlessness; parenthood; shame
Creator
An entity primarily responsible for making the resource
Funkquist EL; Lindquist A; Edner A
Description
An account of the resource
To examine the parent's experiences of bonding in the care of newborns who were seriously ill during the neonatal period and did not survive. Design: Data were collected through 7 interviews with 10 parents whose infants were cared for and died in a neonatal intensive care unit. Methods: The interviews were pilot processed using inductive content analysis and then processed again using deductive content analysis with the attachment theory applied as a theoretical frame. Results: Three main themes emerged from the parents' descriptions: 1. The parents' relationship with the healthcare provider: an alliance between the parent and the healthcare provider can facilitate communication, for example, the use of proposals to promote parents' role in the care; 2. The parents' relationship with the infant: parents' wish to fulfill the role of a protective parent, and it is of importance for the parents' future well-being to take part in care and decision making; and 3. The parents' relationship with the own self: in this unknown situation, parents' expectations of parenthood are broken, and they experience feelings of shame and powerlessness. Conclusion: The relationship between the parent and the healthcare provider affects how the parents bond with their child and their experiences of the healthcare.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/JPN.0000000000000780" target="_blank" rel="noreferrer noopener">10.1097/JPN.0000000000000780</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
Adult
Article
Child
Clinical Article
Content Analysis
Decision Making
Diagnosis
Edner A
February List 2024
Funkquist EL
Health Care Personnel
Human
Infant
Interview
Journal of Perinatal & Neonatal Nursing
Lindquist A
Neonatal Intensive Care Unit
Newborn
Newborn Intensive Care
Parent
parenthood
Pilot Study
Powerlessness
Qualitative Research
shame
Terminal Care
-
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/s0885-3924(97)00075-4" target="_blank" rel="noreferrer">http://doi.org/10.1016/s0885-3924(97)00075-4</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
A randomized, controlled trial of intravenous clodronate in patients with metastatic bone disease and pain
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
1997
Subject
The topic of the resource
Female; Humans; Male; Pain; Adult; Analgesics; Aged; Middle Aged; Treatment Outcome; Analysis of Variance; Chi-Square Distribution; Cross-Over Studies; 80 and over; Comparative Study; Injections; Intravenous; Dose-Response Relationship; Drug; Clodronate; Pain Measurement/drug effects; Clodronic Acid/administration & dosage; Non-Narcotic/administration & dosage; Intractable/drug therapy/etiology; Bone Neoplasms/complications/secondary
Creator
An entity primarily responsible for making the resource
Ernst DS; Brasher P; Hagen N; Paterson AH; MacDonald RN; Bruera E
Description
An account of the resource
To evaluate the effectiveness of intravenous clodronate in ameliorating refractory bone pain in patients with metastatic bone disease, 60 patients with established osseous metastases and persistent bone pain were randomized to receive either clodronate (600 mg or 1500 mg in 500 mL of normal saline) or 500 mL of saline as placebo. After 2 weeks, the patients were crossed over to receive the alternate treatment. After another 2 weeks, each patient and investigator made a blinded choice. Daily visual analogue scales (VAS) and analgesic diaries were recorded throughout the study period. Forty-six patients were evaluable (77%). A treatment x period interaction was identified in the VAS and daily morphine equivalent dose (DMED) scores. First period analysis of the VAS scores for general pain, pain at rest, and pain upon movement demonstrated an average reduction of 13, 14, and 24 mm, respectively, from baseline, but were not significantly different from changes following placebo. The average change in DMED was -6.4 (SE = 2.9) following clodronate and was +24.6 (SE = 14.9) following placebo (p = 0.03). In the blinded choice of which agent resulted in improvement in pain, 26 (57%) patients chose clodronate, 12 (26%) chose placebo, and eight (17%) had no preference (p = 0.0021). For the investigators who also made a blinded selection, clodronate was chosen in 30 (65%) patients, placebo in ten (22%) patients, and no difference was apparent in six (13%) (p < 0.0001). Intravenous clodronate appeared to have analgesic effect in patients with refractory bone pain due to metastatic bone disease. The optimal dose and duration of effect require further evaluation, particularly in patients with stable disease and persistent bone pain.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/s0885-3924(97)00075-4" target="_blank" rel="noreferrer">10.1016/s0885-3924(97)00075-4</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
1997
80 And Over
Adult
Aged
Analgesics
Analysis of Variance
Backlog
Bone Neoplasms/complications/secondary
Brasher P
Bruera E
Chi-Square Distribution
Clodronate
Clodronic Acid/administration & dosage
Comparative Study
Cross-Over Studies
Dose-Response Relationship
Drug
Ernst DS
Female
Hagen N
Humans
Injections
Intractable/drug therapy/etiology
Intravenous
Journal Article
Journal of Pain and Symptom Management
MacDonald RN
Male
Middle Aged
Non-Narcotic/administration & dosage
Pain
Pain Measurement/drug effects
Paterson AH
Treatment Outcome