1
40
2
-
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/pbc.25115" target="_blank" rel="noreferrer">http://doi.org/10.1002/pbc.25115</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
Development of a quality of life instrument for children with advanced cancer: The pediatric advanced care quality of life scale (PAC-QoL)
Publisher
An entity responsible for making the resource available
Pediatric Blood & 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
quality of life; measure; oncology
Creator
An entity primarily responsible for making the resource
Cataudella D; Morley TE; Nesin A; Fernandez CV; Johnston DL; Sung L; Zelcer S
Description
An account of the resource
BACKGROUND: There is currently no published, validated measures available that comprehensively capture quality of life (QoL) symptoms for children with poor-prognosis malignancies. The pediatric advanced care-quality of life scale (PAC-QoL) has been developed to address this gap. The current paper describes the first two phases in the development of this measure. PROCEDURES: The first two phases included: (1) construct and item generation, and (2) preliminary content validation. Domains of QoL relevant to this population were identified from the literature and items generated to capture each; items were then adapted to create versions sensitive to age/developmental differences. Two types of experts reviewed the draft PAC-QoL and rated items for relevance, understandability, and sensitivity of wording: bereaved parents (n = 8) and health care professionals (HCP; n = 7). Content validity was calculated using the index of content validity (CVI [Lynn. Nurs Res 1986;35:382-385]). RESULTS: One hundred and forty-one candidate items congruent with the domains identified as relevant to children with advanced malignancies were generated, and four report versions with a 5-choice response scale created. Parent mean scores for importance, understandability, and sensitivity of wording ranged from 4.29 (SD = 0.52) to 4.66 (SD = 0.50). The CVI ranged from 95% to 100%. These steps resulted in reductions of the PAC-QoL to 57-65 items, as well as a modification of the response scale to a 4-choice option with new anchors. CONCLUSIONS: The next phase of this study will be to conduct cognitive probing with the intended population to further modify and reduce candidate items prior to psychometric evaluation. Pediatr Blood Cancer 2014; 61:1840-1845. © 2014 Wiley Periodicals, Inc.
2014-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/pbc.25115" target="_blank" rel="noreferrer">10.1002/pbc.25115</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
2014
Backlog
Cataudella D
Fernandez CV
Johnston DL
Journal Article
measure
Morley TE
Nesin A
Oncology
Pediatric Blood & Cancer
Quality Of Life
Sung L
Zelcer 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
Backlog
URL Address
<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2009.284</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
Palliative care of children with brain tumors: a parental perspective
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
adolescent; Child; Female; Humans; infant; Male; Young Adult; Palliative Care; home care services; Adult; Parents; Middle Aged; Attitude to Death; Qualitative Research; Focus Groups; Activities of Daily Living; Spirituality; Practice; Preschool; Adaptation; Psychological; Attitudes; Brain neoplasms; Health Knowledge; PEDI Study
Creator
An entity primarily responsible for making the resource
Zelcer S; Cataudella D; Cairney A; Elizabeth L; Bannister SL
Description
An account of the resource
OBJECTIVE: To explore the end-of-life experience of children with brain tumors and their families. DESIGN: Qualitative analysis of focus group interviews. SETTING: Children's Hospital, London Health Sciences Center. PARTICIPANTS: Twenty-five parents of 17 children who had died of brain tumors. INTERVENTION: Parents participated in 3 semistructured focus group interviews. MAIN OUTCOME MEASURES: Themes identified through thematic analysis of interview transcripts. RESULTS: Qualitative analysis identified 3 primary themes. (1) Parents described the dying trajectory of their child as characterized by progressive neurologic deterioration, with the loss of the ability to communicate as a turning point. Parental coping mechanisms included striving to maintain normality and finding spiritual strength through maintaining hope and in the resilience of their child. (2) Parental struggles during this phase included balancing competing responsibilities and speaking with their child about death. (3) Barriers to achieving a home death included suboptimal symptom management, financial and practical hardships, and inadequate community support. A fourth, secondary theme concerned the therapeutic benefits of the interview. CONCLUSION: The neurologic deterioration that characterizes the dying trajectory of children with brain tumors may create significant challenges for health care professionals and the children's parents, supporting the need for increased awareness of the distinct issues in the palliative care of children with brain tumors and for early anticipatory guidance provided for families.
2010-03
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2009.284" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.284</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
Activities of Daily Living
Adaptation
Adolescent
Adult
Archives Of Pediatrics & Adolescent Medicine
Attitude To Death
Attitudes
Backlog
Bannister SL
Brain Neoplasms
Cairney A
Cataudella D
Child
Elizabeth L
Female
Focus Groups
Health Knowledge
home care services
Humans
Infant
Journal Article
Male
Middle Aged
Palliative Care
Parents
PEDI Study
Practice
Preschool
Psychological
Qualitative Research
Spirituality
Young Adult
Zelcer S