1
40
49
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Dublin Core
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Title
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2023 Special Edition 3 - Oncology List
Text
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Citation List Month
2023 SE3 - Oncology
URL Address
<a href="http://doi.org/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener"> http://doi.org/10.12968/ijpn.2023.29.5.236</a>
Dublin Core
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Title
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The need of patients living with cancer for palliative care
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
2023
Subject
The topic of the resource
Health Services Needs and Demand; Palliative Care; Neoplasms; Anxiety; Questionnaires; Adult; Psychometrics; Adolescence; Middle Age; Health Services Accessibility; Aged; Depression; Stress Psychological; Data Analysis Software; Descriptive Research; Human; Descriptive Statistics; Nursing; Self Report; Palliative Care Nursing; Chi Square Test; Jordan; Psychological Distress; Cross Sectional Studies; Patient Attitudes; Convenience Sample; Aged 80 and Over; Cancer Patients; Spiritual Care
Creator
An entity primarily responsible for making the resource
Alnajar MK; Abdalrahim MS; Mosleh SM; Farhan M; Amro K; Darawad MW
Description
An account of the resource
Background: A comprehensive assessment of patients' problems and needs is
Identifier
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<a href="http://doi.org/10.12968/ijpn.2023.29.5.236" target="_blank" rel="noreferrer noopener">10.12968/ijpn.2023.29.5.236</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
2023 SE3 - Oncology
Abdalrahim MS
Adolescence
Adult
Aged
Aged 80 And Over
Alnajar MK
Amro K
anxiety
cancer patients
Chi Square Test
Convenience Sample
Cross Sectional Studies
Darawad MW
Data Analysis Software
Depression
Descriptive Research
Descriptive Statistics
Farhan M
Health Services Accessibility
Health Services Needs And Demand
Human
International Journal of Palliative Nursing
Jordan
Middle Age
Mosleh SM
Neoplasms
Nursing
Palliative Care
Palliative Care Nursing
Patient Attitudes
Psychological Distress
Psychometrics
Questionnaires
Self Report
Spiritual Care
Stress Psychological
-
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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November 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
November List 2023
URL Address
<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children10081315</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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Telehealth Needs and Concerns of Stakeholders in Pediatric Palliative Home Care
Publisher
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Children
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
Health Services Needs and Demand; Female; Male; Palliative Care; Quality of Health Care; Adult; Telemedicine; Middle Age; Qualitative Studies; Home Health Care; Data Analysis Software; Human; Descriptive Statistics; Pediatric Care; Family Attitudes; Funding Source; Semi-Structured Interview; Patient Attitudes; Quantitative Studies; Pilot Studies; Telehealth
Creator
An entity primarily responsible for making the resource
Zimmermann J; Heilmann ML; Fisch-Jessen M; Hauch H; Kruempelmann S; Moeller H; Nagel L; Nathrath M; Vaillant V; Voelker T; Deckers MJ
Description
An account of the resource
Abstract Pediatric palliative home care (PPHC) provides care for children, adolescents, and young adults with life-limiting illnesses in their own homes. Home care often requires long travel times for the PPHC team, which is available to the families 24/7 during crises. The complementary use of telehealth may improve the quality of care. In this pilot study we identify the needs and concerns of patients, teams, and other stakeholders regarding the introduction of telehealth. As a first step, focus groups were conducted in three teams. For the second step, semi-structured interviews were conducted with patients and their families (n = 15). Both steps were accompanied by quantitative surveys (mixed methods approach). The qualitative data were analyzed using content analysis. A total of 11 needs were identified, which were prioritized differently. Highest priority was given to: data transmission, video consultation, access to patient records, symptom questionnaires, and communication support. The concerns identified were related to the assumption of deterioration of the status quo. Potential causes of deterioration were thought to be the negative impact on patient care, inappropriate user behavior, or a high level of technical requirements. As a conclusion, we define six recommendations for telehealth in PPHC.
Identifier
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<a href="http://doi.org/10.3390/children10081315" target="_blank" rel="noreferrer noopener">10.3390/children10081315</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).
2023
Adult
Children
Data Analysis Software
Deckers MJ
Descriptive Statistics
Family Attitudes
Female
Fisch-Jessen M
Funding Source
Hauch H
Health Services Needs And Demand
Heilmann ML
Home Health Care
Human
Kruempelmann S
Male
Middle Age
Moeller H
Nagel L
Nathrath M
November List 2023
Palliative Care
Patient Attitudes
Pediatric Care
Pilot Studies
Qualitative Studies
Quality Of Health Care
Quantitative Studies
Semi-Structured Interview
Telehealth
Telemedicine
Vaillant V
Voelker T
Zimmermann J
-
Dublin Core
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Title
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July 2022 List
Text
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Citation List Month
July 2022 List
URL Address
<a href="http://doi.org/10.1016/j.ienj.2022.101173" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.ienj.2022.101173</a>
Dublin Core
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Title
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Parental support needs during pediatric resuscitation: A systematic review
Publisher
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International Emergency Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Health services needs and demand; Parents; Pediatrics; Resuscitation; Social support; Systematic review
Creator
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Ghavi A; Hassankhani H; Powers K; Arshadi-Bostanabad M; Namdar-Areshtanab H; Heidarzadeh M
Description
An account of the resource
Background Resuscitation of a child is one of the most critical times that parents need support, and parental support is fundamental to providing family-centered care in high acuity settings. The aim of this systematic review was to appraise and synthesize studies conducted to examine the support needs of parents during resuscitation of their child from their own perspective. Method The PRISMA model guided the systematic literature search of Google Scholar, PubMed, Cochrane, Scopus, and Ovid for studies published until the end of 2020. Keywords used were: family support, family-centered care, family needs, resuscitation, CPR, children, neonatal, pediatric, family presence, family-witnessed, and parents. Results There were 787 articles located. After reviewing for relevancy, 21 articles met criteria and were included in this review. Findings indicate the needs of parents during resuscitation of their child include: Spiritual and cultural support; Communication with the child before and after resuscitation; Professional behavior from staff; Receiving information; Presence at resuscitation; Trust in the resuscitation team; and Having physical and mental needs met. Conclusion Parents have differing support needs when their child is resuscitated in the hospital, and meeting these needs is critical for providing family-centered care.
Identifier
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<a href="http://doi.org/10.1016/j.ienj.2022.101173" target="_blank" rel="noreferrer noopener">10.1016/j.ienj.2022.101173</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
Arshadi-Bostanabad M
Ghavi A
Hassankhani H
Health Services Needs And Demand
Heidarzadeh M
International Emergency Nursing
July 2022 List
Namdar-Areshtanab H
Parents
Pediatrics
Powers K
Resuscitation
Social Support
Systematic Review
-
Dublin Core
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Title
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October 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
September 2018 List
URL Address
<a href="http://doi.org/10.1111/jan.13702" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1111/jan.13702</a>
Dublin Core
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Title
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Meeting the needs of young adults with life-limiting conditions: A UK survey of current provision and future challenges for hospices
Publisher
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Journal of Advanced Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
Adult; Content Analysis; Convenience Sample; Cross Sectional Studies; Data Analysis Software; Descriptive Research; Descriptive Statistics; Health Services Needs and Demand; Hospice Care; Human; Terminally Ill Patients -- In Adulthood; Thematic Analysis; United Kingdom; Young Adult
Creator
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Knighting K; Bray L; Downing J; Kirkcaldy AJ; Mitchell TK; O'Brien MR; Pilkington M; Jack Barbara A
Description
An account of the resource
AIM: The aim of this study was to seek views of UK children's and adult hospices on the availability and challenges of providing services for young adults with life-limiting conditions. BACKGROUND: Internationally, there are a growing number of young adults with life-limiting conditions and/or complex needs which are degenerative, progressive and diverse and involve complex life-long symptom, medication management as well as palliative care. There are 55,721 young adults, aged 18-40 in England, which continues to increase. The hospice sector is experiencing demands to extend services for this population despite concerns about the appropriateness of adult hospices and their nursing staff to provide care for the complex and unfamiliar conditions of this patient group. Evidence is needed of hospices' views and the main challenges faced providing services for young adults. DESIGN: Descriptive cross-sectional survey. METHODS: xChildren and adult hospices completed an online survey exploring service provision and their views of respite care for young adults with life-limiting conditions from 18 years old and onward. Data were collected between October 2015 - February 2016. FINDINGS: Respondents (N = 76 hospices) reported that children's hospices predominantly provided short breaks and end-of-life care; adult hospices provided mainly symptom management, end-of-life care and day services. Main challenges were lack of existing adult respite services; lack of funding and capacity; lack of a skilled workforce in adult hospices; and the need for better integrated service provision. CONCLUSION: Examples of good collaborative working were reported. With an increasing population of young adults and pressure on families, it is vital that services work together to find sustainable solutions to the challenges.
Identifier
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<a href="http://doi.org/10.1111/jan.13702" target="_blank" rel="noreferrer noopener">10.1111/jan.13702</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).
2018
Adult
Bray L
Content Analysis
Convenience Sample
Cross Sectional Studies
Data Analysis Software
Descriptive Research
Descriptive Statistics
Downing J
Health Services Needs And Demand
Hospice Care
Human
Jack Barbara A
Journal Of Advanced Nursing
Kirkcaldy AJ
Knighting K
Mitchell TK
O'Brien MR
Pilkington M
September 2018 List
Terminally Ill Patients -- In Adulthood
Thematic Analysis
United Kingdom
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/10.12968/ijpn.2014.20.3.130" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.3.130</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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Assessment of the need for palliative care for children in South Africa
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
2014
Subject
The topic of the resource
adolescent; Child; Cross-Sectional Studies; Humans; infant; Young Adult; Palliative Care; Health Services Accessibility; Health Services Needs and Demand; Palliative Care; Preschool; Newborn; South Africa
Creator
An entity primarily responsible for making the resource
Connor S; Sisimayi C; Downing J; King E; Lim Ah KP; Yates R; Marston J
Description
An account of the resource
UNICEF and the International Children's Palliative Care Network undertook a joint analysis in three sub-Saharan countries-Zimbabwe, South Africa, and Kenya-to estimate the palliative care need among their children and to explore these countries' capacities to deliver children's palliative care (CPC). This report concerns the findings from South Africa. The study adopted a cross-sectional mixed-methods approach using both quantitative and qualitative data obtained from primary and secondary sources. CPC need was estimated using prevalence and mortality statistics. The response to the need and existing gaps were analysed using data obtained from a literature review, interviews with key persons, and survey data from service providers.The findings show very limited CPC service coverage for children in the public sector. In addition, services are mainly localised, with minimal reach. Less than 5% of the children needing care in South Africa are receiving it, with those receiving it being closer to the end of life. Barriers to the delivery of CPC include fear of opioid use, lack of education on CPC, lack of integration into the primary care system, lack of policies on CPC, and lack of community and health professional awareness of CPC needs and services. Estimating the need for CPC is a critical step in meeting the needs of children with life-threatening conditions and provides a sound platform to advocate for closure of the unacceptably wide gaps in coverage.
2014-03
Identifier
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<a href="http://doi.org/10.12968/ijpn.2014.20.3.130" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.3.130</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
Backlog
Child
Connor S
Cross-sectional Studies
Downing J
Health Services Accessibility
Health Services Needs And Demand
Humans
Infant
International Journal of Palliative Nursing
Journal Article
King E
Lim Ah KP
Marston J
Newborn
Palliative Care
Preschool
Sisimayi C
South Africa
Yates R
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/10.12968/ijpn.2014.20.4.165" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.4.165</a>
Dublin Core
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Title
A name given to the resource
Sharing the care: the key-working experiences of professionals and the parents of life-limited children
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
2014
Subject
The topic of the resource
adolescent; Child; Female; Humans; Male; Terminal Care; Great Britain; Adult; Parents; Questionnaires; Middle Aged; Professional-Family Relations; Health Services Needs and Demand; Health Personnel; caregivers; Child Health Services; Focus Groups; Patient Care Planning; Stress; Psychological
Creator
An entity primarily responsible for making the resource
Rodriguez A; King N
Description
An account of the resource
AIMS: To explore the lived experience of caring and care planning for a child with a life-limiting condition (LLC). METHOD: Using van Manen's conceptualisation of hermeneutic phenomenology, three focus groups were conducted with 21 paediatric palliative care professionals, and interviews were conducted with 20 parents of children with LLCs. FINDINGS: Parents' expectations for support were raised by the diagnosis, but the reality could disappoint, which put pressures on professionals. Current service designs with respect to key working did not always coincide with family preferences. Both parents and professionals found that the care journey required them to shift personas to respond to different contexts. CONCLUSIONS: The findings are limited by the sample characteristics, but they provide insight for current policy and practice initiatives. The key worker needs to be mindful of historical care arrangements and be prepared to step into the family 'team' arrangements.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2014.20.4.165" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.4.165</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
Adolescent
Adult
Backlog
Caregivers
Child
Child Health Services
Female
Focus Groups
Great Britain
Health Personnel
Health Services Needs And Demand
Humans
International Journal of Palliative Nursing
Journal Article
King N
Male
Middle Aged
Parents
Patient Care Planning
Professional-family Relations
Psychological
Questionnaires
Rodriguez A
Stress
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/10.12968/ijpn.2014.20.6.265" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2014.20.6.265</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
Does the Belgian law legalising euthanasia for minors really address the needs of life-limited children?
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Humans; Terminally Ill; referral and consultation; Euthanasia; Health Services Needs and Demand; Belgium; Freedom
Creator
An entity primarily responsible for making the resource
Friedel M
Identifier
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<a href="http://doi.org/10.12968/ijpn.2014.20.6.265" target="_blank" rel="noreferrer">10.12968/ijpn.2014.20.6.265</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
2014-06
2014
Adolescent
Backlog
Belgium
Child
Euthanasia
Freedom
Friedel M
Health Services Needs And Demand
Humans
International Journal of Palliative Nursing
Journal Article
Referral And Consultation
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/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2013-3124</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
Pediatric advance directives: parents' knowledge, experience, and preferences
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Cross-Sectional Studies; Female; Humans; Male; Palliative Care; Adult; Attitude to Health; Logistic Models; Prospective Studies; Health Services Needs and Demand; Socioeconomic Factors; end of life; adolescent; Preschool; infant; advance care planning; DNAR; Parents; Parents/px [Psychology]; Advance Directives; Hispanic Americans/sn [Statistics & Numerical Data]; Advance Directives/px [Psychology]; decision making; Attitude; Chronic disease; special-needs children
Creator
An entity primarily responsible for making the resource
Liberman DB; Pham PK; Nager AL
Description
An account of the resource
OBJECTIVES: To explore parents' and caregivers' experience, knowledge, and preferences regarding advance directives (ADs) for children who have chronic illness. METHODS: We conducted a prospective, cross-sectional survey of parents and caregivers of children who have chronic illness. During ambulatory medical visits, participants were asked about previous AD experience and knowledge, future preferences regarding AD discussions, their child's past and current health status, and family demographics. RESULTS: Among 307 participants surveyed, previous AD experience was low, with 117 (38.1%) having heard of an AD, 54 (17.6%) having discussed one, and 77 (25.1%) having known someone who had an AD. Furthermore, 27 (8.8%) participants had an AD or living will of their own, and 8 (2.6%) reported that their chronically ill child had an AD. Previous AD knowledge was significantly more likely among parents and caregivers who had a college degree than those who did not have a high school diploma, yet significantly less likely among primarily Spanish-speaking parents and caregivers than those primarily English-speaking. Interest in creating an AD for the child was reported by 151 (49.2%) participants, and was significantly more likely among families who had more frequent emergency department visits over the previous year. CONCLUSIONS: The limited AD experience and knowledge of parents and caregivers of children who have chronic illness and their interest in creating an AD suggest an unmet need among families of children who have chronic illness, and an opportunity to enhance communication between families and medical teams regarding ADs and end-of-life care.
2014-08
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2013-3124" target="_blank" rel="noreferrer">10.1542/peds.2013-3124</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
Adolescent
Adult
Advance Care Planning
Advance Directives
Advance Directives/px [Psychology]
Attitude
Attitude To Health
Backlog
Child
Chronic Disease
Cross-sectional Studies
Decision Making
DNAR
End Of Life
Female
Health Services Needs And Demand
Hispanic Americans/sn [Statistics & Numerical Data]
Humans
Infant
Journal Article
Liberman DB
Logistic Models
Male
Nager AL
Palliative Care
Parents
Parents/px [psychology]
Pediatrics
Pham PK
Preschool
Prospective Studies
Socioeconomic Factors
Special-needs Children
-
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.2014-0009" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2014-0009</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
Children's experiences of cystic fibrosis: a systematic review of qualitative studies
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
adolescent; Child; Humans; Young Adult; Prognosis; Health Services Needs and Demand; social support; Qualitative Research; Social Isolation; Sick Role; Social Adjustment; Cystic Fibrosis; Activities of Daily Living; Self Care; Cost of Illness; Internal-External Control; Defense Mechanisms; Disability Evaluation; Hope; Power (Psychology); quality of life; Preschool; Adaptation; Psychological; Resilience
Creator
An entity primarily responsible for making the resource
Jamieson N; Fitzgerald D; Singh-Grewal D; Hanson CS; Craig JC; Tong A
Description
An account of the resource
BACKGROUND AND OBJECTIVE: Cystic fibrosis (CF) is a common life-shortening genetic disease and is associated with poor psychosocial and quality of life outcomes. The objective of this study was to describe the experiences and perspectives of children and adolescents with CF to direct care toward areas that patients regard as important. METHODS: MEDLINE, Embase, PsycINFO, and Cumulative Index to Nursing and Allied Health Literature were searched from inception to April 2013. We used thematic synthesis to analyze the findings. RESULTS: Forty-three articles involving 729 participants aged from 4 to 21 years across 10 countries were included. We identified 6 themes: gaining resilience (accelerated maturity and taking responsibility, acceptance of prognosis, regaining control, redefining normality, social support), lifestyle restriction (limited independence, social isolation, falling behind, physical incapacity), resentment of chronic treatment (disempowerment in health management, unrelenting and exhausting therapy, inescapable illness), temporal limitations (taking risks, setting achievable goals, valuing time), emotional vulnerability (being a burden, heightened self-consciousness, financial strain, losing ground, overwhelmed by transition), and transplant expectations and uncertainty (confirmation of disease severity, consequential timeliness, hope and optimism). CONCLUSIONS: Adolescents and children with CF report a sense of vulnerability, loss of independence and opportunities, isolation, and disempowerment. This reinforces the importance of the current model of multidisciplinary patient-centered care that promotes shared decision-making, control and self-efficacy in treatment management, educational and vocational opportunities, and physical and social functioning, which can lead to optimal treatment, health, and quality of life outcomes.
2014-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2014-0009" target="_blank" rel="noreferrer">10.1542/peds.2014-0009</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
Activities of Daily Living
Adaptation
Adolescent
Backlog
Child
Cost Of Illness
Craig JC
Cystic Fibrosis
Defense Mechanisms
Disability Evaluation
Fitzgerald D
Hanson CS
Health Services Needs And Demand
Hope
Humans
Internal-External Control
Jamieson N
Journal Article
Pediatrics
Power (psychology)
Preschool
Prognosis
Psychological
Qualitative Research
Quality Of Life
Resilience
Self Care
Sick Role
Singh-Grewal D
Social Adjustment
Social Isolation
Social Support
Tong A
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/10.7748/ncyp2014.04.26.3.16.e349" target="_blank" rel="noreferrer">http://doi.org/10.7748/ncyp2014.04.26.3.16.e349</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
Meeting the needs of siblings of children with life-limiting illnesses
Publisher
An entity responsible for making the resource available
Nursing Children And Young People
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Humans; Terminal Care; Siblings; Professional-Family Relations; Health Services Needs and Demand; Patient-Centered Care; social support; Adaptation; Psychological
Creator
An entity primarily responsible for making the resource
Lane C; Mason J
Description
An account of the resource
Siblings of children with life-threatening or life-limiting illnesses can face a number of challenges, yet this is a group that is often unacknowledged as needing specific support. It is essential that the needs of siblings are recognised and addressed as part of a family-centred approach. This article discusses the experiences and challenges faced by siblings in such families and what children's nurses can do to help. In particular, it outlines a group intervention offered by a community children's palliative care service.
2014-04
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/ncyp2014.04.26.3.16.e349" target="_blank" rel="noreferrer">10.7748/ncyp2014.04.26.3.16.e349</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
Adaptation
Backlog
Child
Health Services Needs And Demand
Humans
Journal Article
Lane C
Mason J
Nursing Children and Young People
Patient-centered Care
Professional-family Relations
Psychological
Siblings
Social Support
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/10.1177/1367493513510630" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493513510630</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
Why does it happen like this?' Consulting with users and providers prior to an evaluation of services for children with life limiting conditions and their families
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
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; Child; Humans; Palliative Care; referral and consultation; Family; Interviews as Topic; disabled children; Health Services Needs and Demand; Health Services Research; Child Health Services; Focus Groups; Children’s participation; quality of care
Creator
An entity primarily responsible for making the resource
Hunt A; Brown E; Coad J; Staniszewska S; Hacking S; Chesworth B; Chambers L
Description
An account of the resource
Children with life limiting conditions and their families have complex needs. Evaluations must consider their views and perspectives to ensure care is relevant, appropriate and acceptable. We consulted with children, young people, their parents and local professionals to gain a more informed picture of issues affecting them prior to preparing a bid to evaluate services in the area. Multiple methods included focus groups, face-to-face and telephone interviews and participatory activities. Recordings and products from activities were analysed for content to identify areas of relevance and concern. An overarching theme from parents was 'Why does it happen like this?' Services did not seem designed to meet their needs. Whilst children and young people expressed ideas related to quality of environment, services and social life, professionals focused on ways of meeting the families' needs. The theme that linked families' concerns with those of professionals was 'assessing individual needs'. Two questions to be addressed by the evaluation are (1) to what extent are services designed to meet the needs of children and families and (2) to what extent are children, young people and their families consulted about what they need? Consultations with families and service providers encouraged us to continue their involvement as partners in the evaluation.
2015-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493513510630" target="_blank" rel="noreferrer">10.1177/1367493513510630</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
2015
Adolescent
Backlog
Brown E
Chambers L
Chesworth B
Child
Child Health Services
Children’s participation
Coad J
Disabled Children
Family
Focus Groups
Hacking S
Health Services Needs And Demand
Health Services Research
Humans
Hunt A
Interviews As Topic
Journal Article
Journal Of Child Health Care
Palliative Care
Quality Of Care
Referral And Consultation
Staniszewska 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/10.1016/j.ejcnurse.2008.10.001" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejcnurse.2008.10.001</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
Implementation of transition programs can prevent another lost generation of patients with congenital heart disease
Publisher
An entity responsible for making the resource available
European Journal Of Cardiovascular Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; Adult; Health Services Needs and Demand; Treatment Outcome; Program Development; Longevity; Morbidity; adolescent; Adolescent Transitions; Heart Defects; Continuity of Patient Care/organization & administration; Aftercare/organization & administration; Congenital/complications/epidemiology/prevention & control; Patient Education as Topic/organization & administration
Creator
An entity primarily responsible for making the resource
Moons P; Hilderson D; Van Deyk K
Description
An account of the resource
Congenital heart disease is the most frequently occurring birth defect. To date, more than 90% of the children born with a heart defect reach adulthood. Since many patients are prone to residua and sequelae, lifelong specialized care is required. However, studies indicate that about one-half to three-quarters of the patients are lost to follow-up when they have grown up. This has resulted in a virtual lost generation. Lapse of care is associated with significant morbidity. Therefore, implementation of strategies to prevent patients from failing to continue regular follow-up is critical. It is argued that transition programs that inform patients about the rationale for ongoing follow-up and that teach them how to navigate the medical system can avoid another lost generation.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejcnurse.2008.10.001" target="_blank" rel="noreferrer">10.1016/j.ejcnurse.2008.10.001</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
2008
Adolescent
Adolescent Transitions
Adult
Aftercare/organization & administration
Backlog
Child
Congenital/complications/epidemiology/prevention & control
Continuity Of Patient Care/organization & Administration
European Journal Of Cardiovascular Nursing
Health Services Needs And Demand
Heart Defects
Hilderson D
Humans
Journal Article
Longevity
Moons P
Morbidity
Patient Education as Topic/organization & administration
Program Development
Treatment Outcome
Van Deyk K
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1016/j.pcl.2007.08.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.pcl.2007.08.002</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
Psychosocial and spiritual needs of children living with a life-limiting illness
Publisher
An entity responsible for making the resource available
Pediatric Clinics Of North America
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; Humans; Health Services Needs and Demand; Interdisciplinary Communication; Expressed Emotion; Activities of Daily Living; Spirituality; Sibling Relations; Psychology; patient care team; Chronic disease; social support; Palliative Care/methods; Pain/psychology/therapy
Creator
An entity primarily responsible for making the resource
McSherry M; Kehoe K; Carroll JM; Kang T; Rourke MT
Description
An account of the resource
Quality end-of-life care includes the management of distressing symptoms; provisions of care, including the assessment and management of psychosocial and spiritual needs; and respite from diagnosis through death and bereavement. Meeting the palliative care goal of improved quality of life depends on medical and nursing practitioners understatnding and effectively assessing psychosocial symptoms.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.pcl.2007.08.002" target="_blank" rel="noreferrer">10.1016/j.pcl.2007.08.002</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
Activities of Daily Living
Backlog
Carroll JM
Child
Chronic Disease
Expressed Emotion
Health Services Needs And Demand
Humans
Interdisciplinary Communication
Journal Article
Kang T
Kehoe K
McSherry M
Pain/psychology/therapy
Palliative Care/methods
Patient Care Team
Pediatric Clinics of North America
Psychology
Rourke MT
Sibling Relations
Social Support
Spirituality
-
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/S0140-6736(07)60718-1" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(07)60718-1</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
Improving end-of-life care for children
Publisher
An entity responsible for making the resource available
Lancet
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; Humans; Intensive Care Units; Health Services Needs and Demand; Preschool; Palliative Care/organization & administration; infant; Pediatric/utilization; hospice care
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(07)60718-1" target="_blank" rel="noreferrer">10.1016/S0140-6736(07)60718-1</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
2007
2007
Backlog
Child
Health Services Needs And Demand
Hospice Care
Humans
Infant
Intensive Care Units
Journal Article
Lancet
Palliative Care/organization & Administration
Pediatric/utilization
Preschool
-
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/YCO.0b013e32832c9221" target="_blank" rel="noreferrer">http://doi.org/10.1097/YCO.0b013e32832c9221</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
Transition of care from child to adult mental health services: the great divide
Publisher
An entity responsible for making the resource available
Current Opinion In Psychiatry
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Child; Humans; Young Adult; Great Britain; Adult; Health Policy; Health Services Needs and Demand; Health Services Research; Outcome and Process Assessment (Health Care); adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Adolescent Health Services/organization & administration; Child Health Services/organization & administration; Community Mental Health Services/organization & administration; Mental Disorders/diagnosis/psychology/therapy
Creator
An entity primarily responsible for making the resource
Singh SP
Description
An account of the resource
PURPOSE OF REVIEW: Adolescents with mental health problems often require transition of care from child and adolescent to adult mental health services. This review is a synthesis of current research and policy literature on transition to describe the barriers at the interface between child and adolescent mental health services and adult mental health services and outcomes of poor transition. RECENT FINDINGS: Adolescence is a risk period for emergence of serious mental disorders. Child and adolescent mental health services and adult mental health services use rigid age cut-offs to delineate service boundaries, creating discontinuities in provision of care. Adolescent mental health services are patchy across the world. Several recent studies have confirmed that problems occur during transition in diverse settings across several countries. In physical health, there are emerging models of practice to improve the process and outcomes of transition, but there is very little comparable literature in mental healthcare. SUMMARY: Poor transition leads to disruption in continuity of care, disengagement from services and is likely to lead to poorer clinical outcomes. Some young people, such as those with neurodevelopmental disorders and complex needs, are at a greater risk of falling through the care gap during transition. Services need robust and high-quality evidence on the process and outcomes of transition so that effective intervention strategies can be developed.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/YCO.0b013e32832c9221" target="_blank" rel="noreferrer">10.1097/YCO.0b013e32832c9221</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
2009
Adolescent
Adolescent Health Services/organization & administration
Adolescent Transitions
Adult
Backlog
Child
Child Health Services/organization & administration
Community Mental Health Services/organization & administration
Continuity Of Patient Care/organization & Administration
Current Opinion In Psychiatry
Great Britain
Health Policy
Health Services Needs And Demand
Health Services Research
Humans
Journal Article
Mental Disorders/diagnosis/psychology/therapy
Outcome And Process Assessment (health Care)
Singh SP
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/10.1111/j.1365-2702.2007.01943.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1365-2702.2007.01943.x</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 experiences of Chinese family members of terminally ill patients - a qualitative study
Publisher
An entity responsible for making the resource available
Journal Of Clinical Nursing
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; Grief; Adult; Questionnaires; Aged; Middle Aged; Professional-Family Relations; Health Services Needs and Demand; Qualitative Research; Nursing Methodology Research; Health Education; Nursing Staff; Practice; adolescent; 80 and over; Adaptation; Psychological; Attitudes; Health Knowledge; social support; Anger; Attitude to Death/ethnology; Hong Kong; Hospital/psychology; Nurse's Role/psychology; Attitude to Health/ethnology; Family/ethnology; Palliative Care/organization & administration/psychology
Creator
An entity primarily responsible for making the resource
Wong MS; Chan SW
Description
An account of the resource
AIM: To describe and understand the experiences of Chinese family members of terminally ill patients during the end of life process in a palliative care unit. BACKGROUND: Palliative care aims to provide care to dying patients and their family members. Skillful interventions are necessary to help family members cope with the impending death of the patient and maintain their emotional equilibrium. Hence, it is important to understand the experiences of family members of palliative care. DESIGN: A phenomenological study was conducted. Data were collected by semi-structured interviews. We interviewed a purposive sample of 20 family members of terminally ill patients in a palliative care unit in Hong Kong. The data were analysed following Colaizzi's phenomenological methodology. RESULTS: Family members experienced anticipatory grief, with reactions that included anger, unease, sadness and helplessness. This was particularly acute when the patient was first admitted to the palliative care unit. However, the family members quickly accepted the reality and committed themselves to the care of the patient, seeking informational and emotional support from the nurses. The families wanted to be assured that the patient had been offered good care and suffered no pain. It was considered important to be with the patient during the dying process. CONCLUSION: This study demonstrated that Chinese family members were committed to the care of the patients in the palliative care unit. Cultural beliefs played a part in influencing family emotions and concerns. RELEVANCE TO CLINICAL PRACTICE: This study offers a direction for family interventions that acknowledge the reactions of family members to the admission of a patient to a palliative care unit. It highlights that families need active informational and emotional support from nurses.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1365-2702.2007.01943.x" target="_blank" rel="noreferrer">10.1111/j.1365-2702.2007.01943.x</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
80 And Over
Adaptation
Adolescent
Adult
Aged
Anger
Attitude To Death/ethnology
Attitude to Health/ethnology
Attitudes
Backlog
Chan SW
Family/ethnology
Female
Grief
Health Education
Health Knowledge
Health Services Needs And Demand
Hong Kong
Hospital/psychology
Humans
Journal Article
Journal of Clinical Nursing
Male
Middle Aged
Nurse's Role/psychology
Nursing Methodology Research
Nursing Staff
Palliative Care/organization & administration/psychology
Practice
Professional-family Relations
Psychological
Qualitative Research
Questionnaires
Social Support
Wong MS
-
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/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1945-1474.2008.tb01137.x</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 home for medically complex children: the role of hospital programs
Publisher
An entity responsible for making the resource available
Journal For Healthcare Quality
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; home care services; Health Services Needs and Demand; Continuity of Patient Care; Models; Organizational; Disease Management; Hospitalized; Hospital-Based
Creator
An entity primarily responsible for making the resource
Cohen E; Friedman J; Nicholas DB; Adams S; Rosenbaum P
Description
An account of the resource
The medical home is a conceptual model of continuous and comprehensive care provision that is associated with improved outcomes for children with special healthcare needs. Most applications of the medical home have focused on improving primary care services. Despite concerted efforts to apply the medical home concept to the care of children with special healthcare needs, many barriers to its implementation still exist, in particular, for the subset of children with special healthcare needs who are medically complex. Applying the medical home concept to hospital-based care coordination may benefit both children with complex conditions and their families, as well as the community-based providers.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1945-1474.2008.tb01137.x" target="_blank" rel="noreferrer">10.1111/j.1945-1474.2008.tb01137.x</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
2008
Adams S
Backlog
Child
Cohen E
Continuity Of Patient Care
Disease Management
Friedman J
Health Services Needs And Demand
home care services
Hospital-Based
Hospitalized
Humans
Journal Article
Journal For Healthcare Quality
Models
Nicholas DB
Organizational
Rosenbaum P
-
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/10.1177/0269216308098214" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216308098214</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
Exploring the experiences and perspectives of families using a children's hospice and professionals providing hospice care to identify future research priorities for children's hospice care
Publisher
An entity responsible for making the resource available
Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; Attitude of Health Personnel; Health Services Accessibility; Health Services Needs and Demand; Qualitative Research; Focus Groups; Needs Assessment; Respite Care; Scotland; Charting the Territory; Family/psychology; Research/organization & administration; Palliative Care/organization & administration/standards; Hospice Care/organization & administration/standards; Terminal Care/organization & administration/psychology/standards
Creator
An entity primarily responsible for making the resource
Malcolm C; Forbat L; Knighting K; Kearney N
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216308098214" target="_blank" rel="noreferrer">10.1177/0269216308098214</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
The main objective of this study is to generate a list of priority topics for children's hospice care research in Scotland from the perspective of its key stakeholders. The method consists of qualitative semi-structured interviews with families using hospice services (n = 5), four focus groups with hospice staff and volunteers (n = 44) and telephone interviews with professionals associated with the hospice (n = 18). Fourteen broad themes emerged following thematic content and interpretive analysis of the interview data. Some of the research themes were specific to certain stakeholder groups, whereas other themes were identified unanimously across all the stakeholder groups as being priority areas for future research. Increasing awareness of and improving access to children's hospice care, hospice and respite care needs of young people, community/home care and issues related to supporting the wider family arose, independently, in all three stakeholder groups as being priority topics for future research. In conclusion, a greater evidence base is required in the field of children's palliative care and the topics researched should be identified and led by those most closely involved in the hospices. Engaging families and care providers in the process of identifying research priorities resulted in the development of an extensive research agenda, which will contribute to quality hospice care for children and families.
2008
Attitude Of Health Personnel
Backlog
Family/psychology
Focus Groups
Forbat L
Health Services Accessibility
Health Services Needs And Demand
Hospice Care/organization & administration/standards
Humans
Journal Article
Kearney N
Knighting K
Malcolm C
Needs Assessment
Palliative Care/organization & administration/standards
Palliative Medicine
Qualitative Research
Research/organization & administration
Respite Care
Scotland
Terminal Care/organization & administration/psychology/standards
-
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/10.1177/1367493508088552" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493508088552</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
What we know (and do not know) about raising children with complex continuing care needs
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Humans; patient care team; Home Nursing; Parents; disabled children; Health Services Needs and Demand; social support; Life Support Care; Pediatric Nursing; Child Care; Cost of Illness; Long-Term Care; Healthcare Disparities; Special
Creator
An entity primarily responsible for making the resource
Carnevale FA; Rehm RS; Kirk S; McKeever P
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">10.1177/1367493508088552</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
2008-03
2008
Backlog
Carnevale FA
Child Care
Cost Of Illness
Disabled Children
Health Services Needs And Demand
Healthcare Disparities
Home Nursing
Humans
Journal Article
Journal Of Child Health Care
Kirk S
Life Support Care
Long-Term Care
McKeever P
Parents
Patient Care Team
Pediatric Nursing
Rehm RS
Social Support
Special
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2007.13.2.23068" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2007.13.2.23068</a>
Dublin Core
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Title
A name given to the resource
The reflections you get': an exploration of body image and cachexia.
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Female; Humans; Male; England; Attitude to Health; Interpersonal Relations; Prognosis; Questionnaires; Aged; Middle Aged; Health Services Needs and Demand; Qualitative Research; Social Isolation; Holistic Health; Spirituality; Nursing Methodology Research; Body Image; 80 and over; Adaptation; Psychological; social support; Social Behavior; Terminally Ill/px [Psychology]; Narration; Palliative Care/mt [Methods]; Cachexia/et [Etiology]; Neoplasms/co [Complications]; Quality of Life/px [Psychology]; Palliative Care/px [Psychology]; Cachexia/px [Psychology]; N
Creator
An entity primarily responsible for making the resource
Hinsley R; Hughes R
Description
An account of the resource
BACKGROUND: cachexia has a detrimental effect on quality of life and is an indicator of poor prognosis. The meanings people attach to their lived experiences of cachexia are unknown. AIMS: to explore the impact of cachexia on body image of people with advanced cancer, their emotions, relationships and social functioning. DESIGN: qualitative study using face-to-face in-depth interviews of a conversational style. Rich narrative data analysed by thematic content analysis. PARTICIPANTS: 12 participants recruited from two community palliative care teams in south east England. RESULTS: altered body image impacts on other aspects of embodiment: the emotions, spirituality, relationships and social functioning. Lives were restricted and isolated, which was compounded by emotional distancing by carers and health care professionals. Participants discussed their repeated attempts to re-adapt to disruptions of self caused by an altered body image. CONCLUSIONS: the key study implications focus on the need for (i) improved holistic care and support, and advice; (ii) training and awareness raising of care professionals; (iii) further research on the lived experiences of the condition and the development of effective measures of cachexia.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2007.13.2.23068" target="_blank" rel="noreferrer">10.12968/ijpn.2007.13.2.23068</a>
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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
80 And Over
Adaptation
Aged
Attitude To Health
Backlog
Body Image
Cachexia/et [Etiology]
Cachexia/px [Psychology]
England
Female
Health Services Needs And Demand
Hinsley R
Holistic Health
Hughes R
Humans
International Journal of Palliative Nursing
Interpersonal Relations
Journal Article
Male
Middle Aged
N
Narration
Neoplasms/co [complications]
Nursing Methodology Research
Palliative Care/mt [methods]
Palliative Care/px [psychology]
Prognosis
Psychological
Qualitative Research
Quality Of Life/px [psychology]
Questionnaires
Social Behavior
Social Isolation
Social Support
Spirituality
Terminally Ill/px [Psychology]
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2008.14.5.29492</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
Families' transition to a Canadian paediatric hospice. Part one: planning a pilot study
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Child; Humans; Palliative Care; Pediatrics; Canada; Health Planning; Health Services Needs and Demand; Pilot Projects; NET CV; Hospices/organization & administration
Creator
An entity primarily responsible for making the resource
Steele R; Derman S; Cadell S; Davies B; Siden H; Straatman L
Description
An account of the resource
This article describes the rationale for planning and conducting a qualitative pilot study about families' transition to a Canadian paediatric hospice. Discussion includes: background information and a literature review pertinent to the study; debate around the term 'hospice' versus 'palliative care'; the different and unique needs of children requiring a palliative approach compared with adult hospice patients; and information about planning and beginning the study, including the rationale for a pilot, details about the study site, recruitment and procedures, and data collection and analysis. The results from the pilot study, as well as implications for practice and research are reported in part two.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2008.14.5.29492" target="_blank" rel="noreferrer">10.12968/ijpn.2008.14.5.29492</a>
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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
2008
Backlog
Cadell S
Canada
Child
Davies B
Derman S
Health Planning
Health Services Needs And Demand
Hospices/organization & administration
Humans
International Journal of Palliative Nursing
Journal Article
NET CV
Palliative Care
Pediatrics
Pilot Projects
Siden H
Steele R
Straatman 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
Backlog
URL Address
<a href="http://doi.org/10.1515/ijamh.2007.19.3.295" target="_blank" rel="noreferrer">http://doi.org/10.1515/ijamh.2007.19.3.295</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
Transition care for young people with chronic illness
Publisher
An entity responsible for making the resource available
International Journal Of Adolescent Medicine And Health
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; Humans; Cooperative Behavior; Health Services Accessibility; Health Services Needs and Demand; Age Factors; Patient Participation; Australia; Adolescent Health Services; adolescent; Adolescent Transitions; Continuity of Patient Care/organization & administration; Delivery of Health Care/organization & administration
Creator
An entity primarily responsible for making the resource
Steinbeck KS; Brodie L; Towns SJ
Description
An account of the resource
Young people with a chronic illness or disability originating in childhood ultimately need transition to adult care. The process of leaving a familiar paediatric service and effectively engaging in appropriate adult health care can be challenging and complex. The process often occurs when there are other significant transitions in a young person's life. Australia has a number of state-wide transition initiatives, which aim to address the consistent themes of transition including health care equity, information transfer between health services, consumer participation and the engagement of adult services. What is apparent is the need for the development of transition models, ideally by collaboration between paediatric and adult services, which can be trialed and evaluated in order to best inform how resources need to be distributed. It is also clear that there will be a number of models, defined by the specific disease process. There should always be an emphasis on the needs and wellbeing of young people with chronic illness and the acknowledgement that they should be supported in their quest to lead a normal life.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1515/ijamh.2007.19.3.295" target="_blank" rel="noreferrer">10.1515/ijamh.2007.19.3.295</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
Adolescent
Adolescent Health Services
Adolescent Transitions
Age Factors
Australia
Backlog
Brodie L
Child
Continuity Of Patient Care/organization & Administration
Cooperative Behavior
Delivery of Health Care/organization & administration
Health Services Accessibility
Health Services Needs And Demand
Humans
International Journal Of Adolescent Medicine And Health
Journal Article
Patient Participation
Steinbeck KS
Towns SJ
-
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/j.iccn.2005.04.002" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.iccn.2005.04.002</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
Mothers' recollections of the Paediatric Intensive Care Unit: associations with psychopathology and views on follow up
Publisher
An entity responsible for making the resource available
Intensive and Critical Care Nursing
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; Intensive Care Units; Adult; Attitude to Health; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Severity of Illness Index; Risk Factors; Nursing Methodology Research; Preschool; infant; Mothers/psychology; retrospective studies; ICU Decision Making; social support; Psychiatric Status Rating Scales; Stress Disorders; Acute/diagnosis/prevention & control/psychology; Aftercare/organization & administration/psychology; Hospitalized; Mass Screening; Pediatric/organization & administration; Traumatic
Creator
An entity primarily responsible for making the resource
Colville GA; Gracey D
Description
An account of the resource
The aim of this study was to establish rates of posttraumatic stress symptoms in mothers after a child's admission to a Paediatric Intensive Care Unit (PICU) and their views on the potential value of a follow up appointment with PICU staff. Thirty-four mothers completed the Parental Stressor Scale:PICU, the General Health Questionnaire (GHQ-28) and the Impact of Event Scale, 8 months after discharge. In total 18/34 (53%) scored > or =5 on the GHQ-28 and 6/32 (18%) of the sample scored in the severe range (>35) on the Impact of Event Scale. Distress was associated with retrospective reports of stress experienced during admission (p < 0.001) but not with other demographic or medical variables. Mothers who talked about their feelings at the time of the admission had lower posttraumatic stress scores at 8 months (p = 0.02) and 25/34 (74%) mothers would have appreciated the offer of a follow up appointment. Screening for distress during admission with the Parental Stressor Scale:PICU may identify those mothers in greatest need of psychological support. Mothers' recollections of the Paediatric Intensive Care Unit: Associations with psychopathology and views on follow up.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.iccn.2005.04.002" target="_blank" rel="noreferrer">10.1016/j.iccn.2005.04.002</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
Acute/diagnosis/prevention & control/psychology
Adult
Aftercare/organization & administration/psychology
Attitude To Health
Backlog
Child
Colville GA
Communication
Cross-sectional Studies
Female
Gracey D
Health Services Needs And Demand
Hospitalized
Humans
ICU Decision Making
Infant
Intensive and Critical Care Nursing
Intensive Care Units
Journal Article
Male
Mass Screening
Mothers/psychology
Nursing Methodology Research
Pediatric/organization & Administration
Preschool
Professional-family Relations
Psychiatric Status Rating Scales
Questionnaires
Retrospective Studies
Risk Factors
Severity Of Illness Index
Social Support
Stress Disorders
Traumatic
-
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/j.soncn.2004.12.015" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.soncn.2004.12.015</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
Comparing research priorities for pediatric oncology from two panels of experts
Publisher
An entity responsible for making the resource available
Seminars In Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Humans; United States; Attitude of Health Personnel; Health Services Needs and Demand; Pediatric Nursing; Research Support; Oncologic Nursing; Congresses; Health Priorities; National Institutes of Health (U.S.)/organization & administration; Nursing Research/organization & administration; Professional Staff Committees/organization & administration
Creator
An entity primarily responsible for making the resource
Hare ML
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.soncn.2004.12.015" target="_blank" rel="noreferrer">10.1016/j.soncn.2004.12.015</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
Description
An account of the resource
2005
2005
Attitude Of Health Personnel
Backlog
Child
Congresses
Hare ML
Health Priorities
Health Services Needs And Demand
Humans
Journal Article
National Institutes of Health (U.S.)/organization & administration
Nursing Research/organization & administration
Oncologic Nursing
Pediatric Nursing
Professional Staff Committees/organization & administration
Research Support
Seminars In Oncology Nursing
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/10.1097/00005721-200511000-00007" target="_blank" rel="noreferrer">http://doi.org/10.1097/00005721-200511000-00007</a>
Dublin Core
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Title
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Evidence for healing interventions with perinatal bereavement
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
2005
Subject
The topic of the resource
Child; Female; Humans; infant; Male; bereavement; Adult; Parents; Attitude to Death; Professional-Family Relations; Health Services Needs and Demand; social support; Age Factors; Nurse's Role; Child Psychology; Sex Factors; Funeral Rites; Helping Behavior; Spirituality; Evidence-Based Medicine; Nursing Evaluation Research; Self-Help Groups; Adaptation; Psychological; bereavement; Newborn; Parents/education/psychology; social support; Intervention; Interventions; sibling bereavement; Maternal-Child Nursing; Funeral Rites/psychology; Maternal-Child Nursing/organization & administration; Nurse's Role/psychology; Symbolism
Creator
An entity primarily responsible for making the resource
Capitulo KL
Description
An account of the resource
The purpose of this article is to explore the concept of perinatal grief and evidence-based healing interventions for it. The loss of a pregnancy or death of an infant causes profound grief, yet society has long minimized or ignored this grief, which is among the most painful of bereavement experiences. Throughout the last century, research on grief and the special needs of bereaved parents has changed the context of professional intervention from protective to supportive. The central focus of bereavement interventions is to assist families in healing by helping them make meaning of their losses. The use of symbols, spirituality, and rituals has been shown to help bring meaning. Research has shown that memories are key to healing, and that gender, age, and relationships bring different grief expressions and experiences. While children's understanding of loss and grief differs with developmental age, they should also be given the opportunity to participate in grief rituals and practices. Professionals who care for bereaved parents have a unique opportunity to offer support by validating their grief, facilitating rituals, providing mementos, and letting the bereaved tell their stories. While no intervention can bring back their beloved children, appropriate intervention can promote healing.
2005-12
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00005721-200511000-00007" target="_blank" rel="noreferrer">10.1097/00005721-200511000-00007</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
Adaptation
Adult
Age Factors
Attitude To Death
Backlog
Bereavement
Capitulo KL
Child
Child Psychology
Evidence-based Medicine
Female
Funeral Rites
Funeral Rites/psychology
Health Services Needs And Demand
Helping Behavior
Humans
Infant
Intervention
Interventions
Journal Article
Male
Maternal-Child Nursing
Maternal-Child Nursing/organization & administration
Newborn
Nurse's Role
Nurse's Role/psychology
Nursing Evaluation Research
Parents
Parents/education/psychology
Professional-family Relations
Psychological
Self-Help Groups
Sex Factors
sibling bereavement
Social Support
Spirituality
Symbolism
The American Journal Of Maternal Child Nursing
-
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/10.1177/1367493506060209" target="_blank" rel="noreferrer">http://doi.org/10.1177/1367493506060209</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 moral experience of parents regarding life-support decisions for their critically-ill children: a preliminary study in France
Publisher
An entity responsible for making the resource available
Journal Of Child Health Care
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; Humans; Intensive Care Units; Grief; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Communication; Clinical Competence; Qualitative Research; Morals; Hospitals; Nursing Methodology Research; Pediatric; Adaptation; Psychological; decision making; infant; Parents/education/psychology; ICU Decision Making; social support; Physician's Role/psychology; Hospitalized/psychology; Intensive Care/psychology; Guilt; Life Support Care/psychology; Attitude to Health/ethnology; Parental Consent/psychology; Paris
Creator
An entity primarily responsible for making the resource
Carnevale FA; Canoui P; Hubert P; Farrell C; Leclerc F; Doussau A; Seguin MJ; Lacroix J
Description
An account of the resource
The common paediatric critical care practice in France is for physicians (rather than parents) to maintain the ultimate responsibility for lifesupport decisions in children. Some French literature asserts that it is inappropriate for parents to bear such responsibilities because they do not have the required knowledge and should be protected from feeling culpable for such decisions. The aim of this grounded theory preliminary study was to examine the moral experience of parents of critically-ill children that required life-support decisions in France. A convenience purposive sample of seven parents was recruited in Paris. Five principal themes emerged as significant from these interviews: (1) a need for more information
(2) physicians should be responsible for life-support decisions
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1367493506060209" target="_blank" rel="noreferrer">10.1177/1367493506060209</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
Adaptation
Attitude to Health/ethnology
Backlog
Canoui P
Carnevale FA
Child
Clinical Competence
Communication
Decision Making
Doussau A
Farrell C
Grief
Guilt
Health Services Needs And Demand
Hospitalized/psychology
Hospitals
Hubert P
Humans
ICU Decision Making
Infant
Intensive Care Units
Intensive Care/psychology
Journal Article
Journal Of Child Health Care
Lacroix J
Leclerc F
Life Support Care/psychology
Morals
Nursing Methodology Research
Parental Consent/psychology
Parents/education/psychology
Paris
Pediatric
Physician's Role/psychology
Professional-family Relations
Psychological
Qualitative Research
Questionnaires
Seguin MJ
Social Support
-
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.2004-0458" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-0458</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
Addressing transition to adult health care for adolescents with special health care needs
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Cross-Sectional Studies; Female; Humans; Male; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Socioeconomic Factors; Sampling Studies; Family Characteristics; Case Management; Aging; adolescent; Parents/psychology; Health Surveys; United States/epidemiology; Continuity of Patient Care/organization & administration; poverty; Chronic Disease/epidemiology/therapy; African Americans/statistics & numerical data; European Continental Ancestry Group/statistics & numerical data; Hispanic Americans/sn [Statistics & Numerical Data]; Insurance Coverage/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Scal P; Ireland M
Description
An account of the resource
OBJECTIVE: To determine the factors associated with addressing the transition from pediatric to adult-oriented health care among US adolescents with special health care needs. METHODS: Data for 4332 adolescents, 14 to 17 years of age, from the 2000-2001 National Survey of Children With Special Health Care Needs were used. The adequacy of transition services was determined by parent self-report. Explanatory variables, including parental education, family poverty status, race/ethnicity, measures of the severity and complexity of conditions, health insurance status, having a personal doctor, and the quality of the parent's relationship with the adolescent's doctor, were entered into a regression model. RESULTS: Overall, 50.2% of parents reported that they had discussed transition issues with their adolescent's doctor and 16.4% had discussed and developed a plan for addressing those needs. In a multivariate regression analysis, correlates of the adequacy of transition services included older age, female gender, complexity of health care needs, and higher quality of the parent-doctor relationship. CONCLUSIONS: Among adolescents with special health care needs, those who were older and those with more complicated needs were more likely to have addressed the transition from a pediatric to adult-oriented system of care. Furthermore, this analysis demonstrated a strong association between a high-quality parent-provider relationship and the extent to which transition issues were addressed. The importance of transition services for adolescents with less complex needs and the overall impact of health care transition services were not assessed in this study and remain important questions for future investigations.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-0458" target="_blank" rel="noreferrer">10.1542/peds.2004-0458</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
African Americans/statistics & numerical data
Aging
Backlog
Case Management
Chronic Disease/epidemiology/therapy
Continuity Of Patient Care/organization & Administration
Cross-sectional Studies
European Continental Ancestry Group/statistics & numerical data
Family Characteristics
Female
Health Services Needs And Demand
Health Surveys
Hispanic Americans/sn [Statistics & Numerical Data]
Humans
Insurance Coverage/statistics & numerical data
Ireland M
Journal Article
Male
Parents/psychology
Pediatrics
Poverty
Professional-family Relations
Questionnaires
Sampling Studies
Scal P
Socioeconomic Factors
United States/epidemiology
-
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.2004-2520" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-2520</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
Helping families raise children with special health care needs at home
Publisher
An entity responsible for making the resource available
Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Child; Humans; Pediatrics; Family; Home Nursing; Health Services Needs and Demand; Respite Care; Community Health Services; adolescent; infant; Disabled Children/legislation & jurisprudence/rehabilitation; Healthy People Programs
Creator
An entity primarily responsible for making the resource
Johnson CP; Kastner TA; American Academy of Pediatrics Committee/Section on Children With Disabilities
Description
An account of the resource
One goal of Healthy People 2010 is to reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010 for persons aged 21 years and under (objective 6-7). Congregate care, in this regard, is defined as any setting in which 4 or more persons with disabilities reside, regardless of whether the residence is located in the community, such as a school, group home, nursing facility, or institution. Although this particular public health objective may reflect an unfamiliar concept for some pediatricians, the American Academy of Pediatrics supports the goals and objectives of Healthy People 2010 as well as the medical home and the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families. To advise families caring for children with special health care needs effectively, the pediatrician should be familiar with the principles of permanency planning and well informed of local family-support services. The pediatrician should also work with the family to identify the range of long-term supports and services available for their child. These supports may include respite for biological families as well as various additional parenting models such as shared parenting, foster care, alternate parents, and adoption. Although family-based supports are preferable, families may consider other out-of-home placements including group homes, placement in a nursing facility, or other forms of institutional care when sufficient family-based services are not available. Once all the options are understood, issues regarding quality of care can be individualized and judged by the parent or guardian, in close collaboration with the pediatrician and other professionals with expertise in permanency planning and long-term supports and services. The purpose of this clinical report is to educate physicians on the philosophy of providing a permanent family environment (permanency planning) for all children, including those with special health care needs, and the importance of adequate and accessible community services to support and maintain the well-being of all family members.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-2520" target="_blank" rel="noreferrer">10.1542/peds.2004-2520</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
American Academy of Pediatrics Committee/Section on Children With Disabilities
Backlog
Child
Community Health Services
Disabled Children/legislation & jurisprudence/rehabilitation
Family
Health Services Needs And Demand
Healthy People Programs
Home Nursing
Humans
Infant
Johnson CP
Journal Article
Kastner TA
Pediatrics
Respite 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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16182412" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16182412</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
Paediatric fever management: continuing education for clinical nurses
Publisher
An entity responsible for making the resource available
Nurse Education Today
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; Analgesics; Attitude of Health Personnel; Education; Questionnaires; Health Services Needs and Demand; Nurse's Role; Time Factors; Hospitals; Nursing Staff; Practice; Pediatric; Attitudes; PedPal Lit; Health Knowledge; Non-Narcotic/therapeutic use; Nursing; Educational Status; Certification; Urban; Nursing Process; Clinical Competence/standards; Continuing/organization & administration; Evidence-Based Medicine/education; Fever/nursing/prevention & control; Hospital/education/psychology; Negativism; Pediatric Nursing/education
Creator
An entity primarily responsible for making the resource
Walsh AM; Edwards HE; Courtney MD; Wilson JE; Monaghan SJ
Description
An account of the resource
PURPOSE: This study examined the influence of level of practice, additional paediatric education and length of paediatric and current experience on nurses' knowledge of and beliefs about fever and fever management. METHOD: Fifty-one nurses from medical wards in an Australian metropolitan paediatric hospital completed a self-report descriptive survey. RESULTS: Knowledge of fever management was mediocre (Mean 12.4, SD 2.18 on 20 items). Nurses practicing at a higher level and those with between one and four years paediatric or current experience were more knowledgeable than novices or more experienced nurses. Negative beliefs that would impact nursing practice were identified. Interestingly, beliefs about fever, antipyretic use in fever management and febrile seizures were similar; they were not influenced by nurses' knowledge, experience, education or level of practice. CONCLUSIONS: Paediatric nurses are not expert fever managers. Knowledge deficits and negative attitudes influence their practice irrespective of additional paediatric education, paediatric or current experience or level of practice. Continuing education is therefore needed for all paediatric nurses to ensure the latest clear evidence available in the literature for best practice in fever management is applied.
2006
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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
2006
Analgesics
Attitude Of Health Personnel
Attitudes
Backlog
Certification
Child
Clinical Competence/standards
Continuing/organization & administration
Courtney MD
Cross-sectional Studies
Education
Educational Status
Edwards HE
Evidence-Based Medicine/education
Female
Fever/nursing/prevention & control
Health Knowledge
Health Services Needs And Demand
Hospital/education/psychology
Hospitals
Humans
Journal Article
Male
Monaghan SJ
Negativism
Non-Narcotic/therapeutic use
Nurse Education Today
Nurse's Role
Nursing
Nursing Process
Nursing Staff
Pediatric
Pediatric Nursing/education
PedPal Lit
Practice
Questionnaires
Time Factors
Urban
Walsh AM
Wilson JE
-
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.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16377241" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16377241</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
Constipation in paediatric oncology
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
2006
Subject
The topic of the resource
Child; Humans; Great Britain; Questionnaires; Health Services Needs and Demand; Nurse's Role; Evidence-Based Medicine; Nursing Evaluation Research; Internet; Dietary Fiber; PedPal Lit; Practice Guidelines; Cathartics/therapeutic use; Palliative Care/methods; Causality; Neoplasms/complications; Information Services; Child Nutrition/education; Constipation/diagnosis/etiology/prevention & control; Nursing Assessment/methods/standards; Oncologic Nursing/methods/standards; Pediatric Nursing/methods/standards
Creator
An entity primarily responsible for making the resource
Selwood K
Description
An account of the resource
Constipation is a common problem encountered by many children during treatment for childhood cancer. It can be distressing and impact on the quality of life for the child. However, the advice and information they and their families receive can vary enormously. The clinical practice group (a subgroup of the paediatric oncology nurses forum (PONF)) decided to examine the management of constipation throughout the paediatric oncology units in the UK. This paper presents the findings and the subsequent action taken and highlights the need for further work.
2006
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
Backlog
Cathartics/therapeutic use
Causality
Child
Child Nutrition/education
Constipation/diagnosis/etiology/prevention & control
Dietary Fiber
European Journal Of Oncology Nursing
Evidence-based Medicine
Great Britain
Health Services Needs And Demand
Humans
Information Services
Internet
Journal Article
Neoplasms/complications
Nurse's Role
Nursing Assessment/methods/standards
Nursing Evaluation Research
Oncologic Nursing/methods/standards
Palliative Care/methods
Pediatric Nursing/methods/standards
PedPal Lit
Practice Guidelines
Questionnaires
Selwood K
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16493302" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16493302</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
Emotion work in the palliative nursing care of children and young people
Publisher
An entity responsible for making the resource available
International Journal Of Palliative Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Adolescent Psychology; Adult; Self Concept; Attitude to Death; Health Services Needs and Demand; Child Psychology; Holistic Health; Job Satisfaction; Organizational Culture; quality of life; adolescent; Psychological; PedPal Lit; Family/psychology; empathy; social support; Adaptation; Attitude of Health Personnel; Emotions; Burnout; Nurse-Patient Relations; Nurse's Role/psychology; Palliative Care/organization & administration/psychology; Professional/prevention & control/psychology; Work/psychology
Creator
An entity primarily responsible for making the resource
Maunder EZ
Description
An account of the resource
The nurse's role in supporting and caring for children and young people with life-limiting illness/conditions and their families requires specialist expertise. This domain can be one of the most emotionally challenging areas of practice. The concept of time, and how long practitioners are involved with individual children and their families may sometimes be underestimated. Emotion work is defined as the work involved in managing feelings in both self and others (Hochschild, 1983). The sense of community within the clinical setting can facilitate the nurse to care and maintain professional boundaries.
2006
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
Adaptation
Adolescent
Adolescent Psychology
Adult
Attitude Of Health Personnel
Attitude To Death
Backlog
Burnout
Child
Child Psychology
Emotions
Empathy
Family/psychology
Health Services Needs And Demand
Holistic Health
Humans
International Journal of Palliative Nursing
Job Satisfaction
Journal Article
Maunder EZ
Nurse-patient Relations
Nurse's Role/psychology
Organizational Culture
Palliative Care/organization & administration/psychology
PedPal Lit
Professional/prevention & control/psychology
Psychological
Quality Of Life
Self Concept
Social Support
Work/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://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16518947" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16518947</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
Developing the Liverpool Care Pathway for the dying child
Publisher
An entity responsible for making the resource available
Paediatric Nursing
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; Humans; England; Health Services Needs and Demand; Pilot Projects; Nurse's Role; Evidence-Based Medicine; Nursing Assessment; Nursing Evaluation Research; Benchmarking; adolescent; Preschool; PedPal Lit; infant; Practice Guidelines; retrospective studies; Documentation/standards; Patient Care Team/organization & administration; Outcome and Process Assessment (Health Care)/organization & administration; Nursing Audit; Palliative Care/organization & administration; Pediatric Nursing/organization & administration; Critical Pathways/organization & administration; Nursing Records/standards; Total Quality Management/organization & administration
Creator
An entity primarily responsible for making the resource
Matthews K; Gambles M; Ellershaw JE; Brook L; Williams M; Hodgson A; Barber M
Description
An account of the resource
In most western societies the death of a child is a rare occurrence. When it does occur, it typically takes place after a period of intensive and often prolonged treatment. In light of the relative infrequency of these events in clinical practice, ensuring that all dying children and their families receive consistent and appropriate care remains a challenge. A retrospective audit of documentation of care for dying children in two paediatric units in the north-west of England illustrated that the care provided was not always documented consistently. This paper highlights work currently underway to develop an integrated care pathway for the care of the dying child based on the Liverpool Care Pathway (LCP). The aim of this work is to facilitate the delivery and recording of optimum care for all dying children and their families.
2006
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
Backlog
Barber M
Benchmarking
Brook L
Child
Critical Pathways/organization & administration
Documentation/standards
Ellershaw JE
England
Evidence-based Medicine
Gambles M
Health Services Needs And Demand
Hodgson A
Humans
Infant
Journal Article
Matthews K
Nurse's Role
Nursing Assessment
Nursing Audit
Nursing Evaluation Research
Nursing Records/standards
Outcome and Process Assessment (Health Care)/organization & administration
Paediatric Nursing
Palliative Care/organization & Administration
Patient Care Team/organization & administration
Pediatric Nursing/organization & administration
PedPal Lit
Pilot Projects
Practice Guidelines
Preschool
Retrospective Studies
Total Quality Management/organization & administration
Williams 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/10.1093/jpepsy/jsh039" target="_blank" rel="noreferrer">http://doi.org/10.1093/jpepsy/jsh039</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
Primary care supports for children with chronic health conditions: identifying and predicting unmet family needs
Publisher
An entity responsible for making the resource available
Journal of Pediatric Psychology
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Humans; infant; Family; Attitude to Health; Questionnaires; Professional-Family Relations; Health Services Needs and Demand; Primary Health Care; adolescent; Non-U.S. Gov't; Research Support; infant; Chronic disease; Newborn; social support; Health Services/standards
Creator
An entity primarily responsible for making the resource
Farmer JE; Marien WE; Clark MJ; Sherman A; Selva TJ
Description
An account of the resource
OBJECTIVE: To examine unmet needs among families of children with chronic health conditions treated in primary care settings and to identify predictors of these needs. METHOD: Primary care physicians referred 83 caregivers of children with chronic health conditions. Mothers completed the Family Needs Survey, as well as other measures of child and family functioning. RESULTS: Mothers reported a high prevalence and broad range of unmet family needs. The most frequent area of need was for information about services and ways to promote child health and development. Predictors of total number of family needs included demographic characteristics, ratings of social support, and appraisals of family burden. Predictors of specific types of family needs varied according to category of need. CONCLUSIONS: Innovative psychosocial intervention programs are needed in primary care settings to reduce family needs and promote child health. More intensive family supports may be indicated for those with minority-group or low socioeconomic status, limited social support, or high perceived burden.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/jpepsy/jsh039" target="_blank" rel="noreferrer">10.1093/jpepsy/jsh039</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
2004
Adolescent
Attitude To Health
Backlog
Child
Chronic Disease
Clark MJ
Family
Farmer JE
Health Services Needs And Demand
Health Services/standards
Humans
Infant
Journal Article
Journal of Pediatric Psychology
Marien WE
Newborn
Non-U.S. Gov't
Primary Health Care
Professional-family Relations
Questionnaires
Research Support
Selva TJ
Sherman A
Social Support
-
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/10.1177/1043454204264393" target="_blank" rel="noreferrer">http://doi.org/10.1177/1043454204264393</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
Human suffering: the need for relationship-based research in pediatric end-of-life care
Publisher
An entity responsible for making the resource available
Journal Of Pediatric Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Child; Humans; Interpersonal Relations; Health Services Needs and Demand; Child Psychology; Sick Role; Spirituality; Stress; quality of life; Adaptation; Psychological; social support; Neoplasms/complications; Nursing Research/organization & administration; Oncologic Nursing/organization & administration; Terminal Care/organization & administration/psychology; Pediatric Nursing/organization & administration; Psychological/etiology/nursing/psychology
Creator
An entity primarily responsible for making the resource
Kane JR; Hellsten MB; Coldsmith A
Description
An account of the resource
Children living with and dying from advanced cancer and their families experience significant suffering. The cure of disease and the relief of suffering are dual moral obligations of our professions. To relieve suffering, health care providers must understand the multiple dimensions of the person who suffers and the complex set of relationships within the natural and the clinical social networks. Pediatric oncology research must include appropriately designed studies with sound methodology and measurement strategies to test and refine theories that account for the link between human relationships and the relief of suffering. Studies should assess as many theoretical models as possible, including the social network, perceptions of support, and provider-recipient interactions; their physical, emotional, behavioral, and spiritual concomitants; and their impact on medical decision making and health outcomes. Future directions in pediatric end-of-life care research must also include evaluating social and spiritual interventions developed on the basis of solid hypotheses regarding the positive and negative influences of interpersonal dynamics on the processes that mediate between suffering and well-being.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1043454204264393" target="_blank" rel="noreferrer">10.1177/1043454204264393</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
2004
Adaptation
Backlog
Child
Child Psychology
Coldsmith A
Health Services Needs And Demand
Hellsten MB
Humans
Interpersonal Relations
Journal Article
Journal Of Pediatric Oncology Nursing
Kane JR
Neoplasms/complications
Nursing Research/organization & administration
Oncologic Nursing/organization & administration
Pediatric Nursing/organization & administration
Psychological
Psychological/etiology/nursing/psychology
Quality Of Life
Sick Role
Social Support
Spirituality
Stress
Terminal Care/organization & administration/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/10.1016/1054-139x(93)90118-9" target="_blank" rel="noreferrer">http://doi.org/10.1016/1054-139x(93)90118-9</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
Frequent school-based clinic utilization: a comparative profile of problems and service needs
Publisher
An entity responsible for making the resource available
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1993
Subject
The topic of the resource
Female; Humans; Male; Health Services Needs and Demand; Socioeconomic Factors; Health Services Research; Mental Health; Sex Factors; Continental Population Groups; adolescent; Risk-Taking; School Health Services/utilization; Educational Status; Ambulatory Care Facilities/utilization; Students/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Wolk LI; Kaplan DW
Description
An account of the resource
The purpose of this study is to compare frequent users of school-based clinic services with students who have an average rate of utilization. SAMPLE: Of the 1413 students enrolled in a Denver school-based clinic (DSBC) during the 1989-1990 school year, frequent clinic users (n = 73) were defined as those who visited the clinic 15 times or more (range, 15-72 visits per year). Average users (n = 82) were defined as students who visited the clinic three times during the year (the mean and median number of visits per student enrolled). Average users were compared. RESULTS: The average utilizers were found to be representative of the entire student population based on age, race, gender, and grade. The frequent users had more females (71%) and a lower grade point average (GPA) (2.11) than the average users (52% female, 2.54 GPA; p
1993
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/1054-139x(93)90118-9" target="_blank" rel="noreferrer">10.1016/1054-139x(93)90118-9</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
1993
Adolescent
Ambulatory Care Facilities/utilization
Backlog
Continental Population Groups
Educational Status
Female
Health Services Needs And Demand
Health Services Research
Humans
Journal Article
Kaplan DW
Male
Mental Health
Risk-Taking
School Health Services/utilization
Sex Factors
Socioeconomic Factors
Students/statistics & numerical data
The Journal Of Adolescent Health : Official Publication Of The Society For Adolescent Medicine
Wolk LI
-
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/10.1080/0742-969x.1996.11882835" target="_blank" rel="noreferrer">http://doi.org/10.1080/0742-969x.1996.11882835</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
Meeting the bereavement needs of kids in patient/families--not just playing around
Publisher
An entity responsible for making the resource available
The Hospice Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
adolescent; Child; Humans; infant; bereavement; Family; Adult; Attitude to Death; Health Services Needs and Demand; Communication; Age Factors; Child Psychology; Play Therapy; Preschool; sibling bereavement
Creator
An entity primarily responsible for making the resource
Seager KM; Spencer SC
Description
An account of the resource
Children grieve differently than adults. Although the unit of care in hospice is the patient and family, emphasis is often on the grown members of the family and the anticipatory grief and bereavement needs of children and adolescents are sometimes not met adequately. In this paper, hands-on strategies for working with children both before and after a significant death are presented, as well as appropriate context information on the grieving process for youth under age 18.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/0742-969x.1996.11882835" target="_blank" rel="noreferrer">10.1080/0742-969x.1996.11882835</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
1996
Adolescent
Adult
Age Factors
Attitude To Death
Backlog
Bereavement
Child
Child Psychology
Communication
Family
Health Services Needs And Demand
Humans
Infant
Journal Article
Play Therapy
Preschool
Seager KM
sibling bereavement
Spencer SC
The Hospice Journal
-
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
PedPalASCNet Member Publications
Subject
The topic of the resource
A collection of relevant articles published by one or more of PedPalASCNet's members
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/10.1080/07481189608252780" target="_blank" rel="noreferrer">http://doi.org/10.1080/07481189608252780</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
Assessment of need for a children's hospice program
Publisher
An entity responsible for making the resource available
Death Studies
Date
A point or period of time associated with an event in the lifecycle of the resource
1996
Subject
The topic of the resource
Child; Humans; Grief; Canada; Health Services Needs and Demand; Death; Child Health Services; Program Development; PPC Book Chapter 2011 (Kim Widger); adolescent; Preschool; hospice care
Creator
An entity primarily responsible for making the resource
Davies B
Description
An account of the resource
Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide periodic, facility-based respite and palliative care to children with life-threatening, progressive illness and to their families. Loss and grief support is another integral component of the program. The concept of pediatric hospice care is founded on the premise that dying children and their families can benefit from care designed to maximize present quality of life; yet, the creation of such programs must be based on demonstrated need. One vital step in the development of the Canuck Place program was assessing the need for such a program within the province. Data from both traditional quantitative and less traditional qualitative sources were used to document and put forth an argument in support of developing a children's hospice program. The final report addressed several components that are summarized in this article for the purposes of assisting others who may wish to undertake similar projects in their own communities.
1996
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/07481189608252780" target="_blank" rel="noreferrer">10.1080/07481189608252780</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
1996
Adolescent
Backlog
Canada
Child
Child Health Services
Davies B
Death
Death studies
Grief
Health Services Needs And Demand
Hospice Care
Humans
Journal Article
PPC Book Chapter 2011 (Kim Widger)
Preschool
Program Development
-
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/10.1111/j.1744-6155.1997.tb00019.x" target="_blank" rel="noreferrer">http://doi.org/10.1111/j.1744-6155.1997.tb00019.x</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
Health-related, help-seeking behaviors in female Mexican-American adolescents
Publisher
An entity responsible for making the resource available
Journal Of The Society Of Pediatric Nurses
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Child; Female; Humans; United States; Pregnancy; Health Services Needs and Demand; Focus Groups; Adolescent Health Services; Hispanic Americans; Health Behavior; adolescent; health promotion; Mexico/ethnology; Sex Education
Creator
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Rew L
Description
An account of the resource
PURPOSE: To explore and describe the health-related, help-seeking behaviors of young female Mexican-American adolescents. DESIGN: Qualitative exploratory-descriptive design using focus groups. SETTING: Community recreation centers. PARTICIPANTS: 18 female Mexican-Americans ages 10-16 years residing in a South Central state. MAIN OUTCOME MEASURES: A demographic information form and semi-structured interview designed for the study. RESULTS: Subjects described two themes of help-seeking behaviors: seeking help for physical health problems and preventive healthcare from formal sources (i.e., community health clinics, family physicians, and public schools), and seeking help for concerns about pubertal development and pregnancy from informal sources (i.e., their mothers, aunts, sisters, and friends). CONCLUSION: While young, female Hispanic adolescents may seek help from formal sources for preventive healthcare services and physical health problems not related to sexuality, they tend to seek help from informal sources for psychosocial and sexuality issues. Community-based interventions should be developed that focus on the importance of this pattern of help-seeking behaviors for young female Hispanics.
1997
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/j.1744-6155.1997.tb00019.x" target="_blank" rel="noreferrer">10.1111/j.1744-6155.1997.tb00019.x</a>
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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
Adolescent
Adolescent Health Services
Backlog
Child
Female
Focus Groups
Health Behavior
Health Promotion
Health Services Needs And Demand
Hispanic Americans
Humans
Journal Article
Journal Of The Society Of Pediatric Nurses
Mexico/ethnology
Pregnancy
Rew L
Sex Education
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/10.1207/s15326888chc2003_6" target="_blank" rel="noreferrer">http://doi.org/10.1207/s15326888chc2003_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
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Focus group interview with parents of children with medically complex needs: an intimate look at their perceptions and feelings.
Publisher
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Children's Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1991
Subject
The topic of the resource
Female; Humans; Male; Health Services Needs and Demand; Longitudinal Studies; Florida; Respite Care; Family Health; Counseling; Self-Help Groups; Interviews; Parents/psychology; Home Nursing/psychology; Patient Care Planning/standards
Creator
An entity primarily responsible for making the resource
Diehl SF; Moffitt KA; Wade SM
Description
An account of the resource
The purpose of this paper was to identify the needs of parents of children with medically complex needs from their own perception. In order to provide in-depth information, the focus group interview technique was used. Several strong recurrent themes were identified. The most persistent need was for a general organization or framework with which the care providers could operate. Along these same lines, the fragmentation of training, needs and services was consistently stated. A general lack of information in terms of home care and how to plan for the future was identified. Support groups were universally lauded for the invaluable services provided to the care parents.
1991
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1207/s15326888chc2003_6" target="_blank" rel="noreferrer">10.1207/s15326888chc2003_6</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
1991
Backlog
Children's Health Care
Counseling
Diehl SF
Family Health
Female
Florida
Health Services Needs And Demand
Home Nursing/psychology
Humans
Interviews
Journal Article
Longitudinal Studies
Male
Moffitt KA
Parents/psychology
Patient Care Planning/standards
Respite Care
Self-Help Groups
Wade SM
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.12968/ijpn.2001.7.5.12635" target="_blank" rel="noreferrer">http://doi.org/10.12968/ijpn.2001.7.5.12635</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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The need for palliative care for patients with non-cancer diseases: a review of the evidence
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
2001
Subject
The topic of the resource
Humans; Health Services Needs and Demand; Research Design; Patient Education as Topic; Palliative Care/psychology; Psychological; Stress; Terminal Care/psychology
Creator
An entity primarily responsible for making the resource
Luddington L; Cox S; Higginson I; Livesley B
Description
An account of the resource
The palliative care needs of patients with cancer are understood and managed well by specialist palliative care services. Patients dying of non-cancer diseases are rarely offered these services. A literature review was conducted to determine the physical and psychosocial problems of patients dying from non-cancer diseases. Studies were identified using a systematic keyword search of six electronic databases. Fourteen studies were identified and assessed according to rigour of design. Findings suggest that some patients dying of non-cancer have needs comparable with those dying of cancer. Low response rates, subject bias, and measurement bias mean that findings should be viewed with caution. More prospective, rigorously designed research is necessary to identify which patients with non-cancer diagnoses may benefit from specialist palliative care.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.12968/ijpn.2001.7.5.12635" target="_blank" rel="noreferrer">10.12968/ijpn.2001.7.5.12635</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
2001
Backlog
Cox S
Health Services Needs And Demand
Higginson I
Humans
International Journal of Palliative Nursing
Journal Article
Livesley B
Luddington L
Palliative Care/psychology
Patient Education as Topic
Psychological
Research Design
Stress
Terminal Care/psychology