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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
March 2023 List
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
March List 2023
URL Address
<a href="http://doi.org/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/spcare-2022-HUNC.102</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
Learning Disability Nurses in Palliative Care - A Narrative on Diversifying the Workforce and the Caseload
Publisher
An entity responsible for making the resource available
BMJ Supportive and Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
learning disorder; narrative; nurse; Palliative Therapy; workforce; Adult; Adulthood; Attention; Autism; Child; cognitive defect; cohort analysis; conference abstract; distress syndrome; employment; epilepsy; Female; geriatric disorder; Hospice; Human; learning; Learning Disorders; malignant cardiac tumor; neurodisability; Palliative Care; skill; Terminal Care; treatment failure
Creator
An entity primarily responsible for making the resource
Marsden S
Description
An account of the resource
There have been multiple recent reports regarding the inequalities in palliative and end of life care for people with learning disabilities; but little if any attention paid to the role of learning disability nurses working in palliative care. Children's hospices often have a well-established cohort of learning disability nurses in their employment. This has not currently translated into adult palliative care; increasingly though, children with complex neuro-disabilities and life-limiting conditions are living into adulthood with good care, and need specialist symptom management and end of life care through transition into adult services. Adults with learning disabilities and other complex health conditions are also now living into later life and are more likely to develop age related illnesses such as cancers, heart failure etc., rather than dying from an acute episode related to epilepsy, for example. Learning disability nurses bring a specialist skill set in supporting people with a known LD diagnosis, but also those with acquired cognitive impairment, those in mental distress, people with communication difficulties and autistic people. A Learning Disability Nurse may recognise undiagnosed learning or support needs in patients, and be able to provide strategies to ameliorate those needs. The author would like to present a narrative on her experiences of moving into palliative care and how Learning Disability Nurses can provide a new perspective and skill set within the specialist palliative care team.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/spcare-2022-HUNC.102" target="_blank" rel="noreferrer noopener">10.1136/spcare-2022-HUNC.102</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2022
Adult
ADULTHOOD
Attention
Autism
BMJ Supportive and Palliative Care
Child
Cognitive Defect
Cohort Analysis
conference abstract
Distress Syndrome
Employment
Epilepsy
Female
geriatric disorder
Hospice
Human
Learning
learning disorder
Learning Disorders
malignant cardiac tumor
March List 2023
Marsden S
Narrative
Neurodisability
Nurse
Palliative Care
Palliative Therapy
Skill
Terminal Care
Treatment Failure
workforce
-
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.phac-aspc.gc.ca/hp-ps/dca-dea/publications/rtt-grr-2005/2-eng.php" target="_blank" rel="noreferrer">http://www.phac-aspc.gc.ca/hp-ps/dca-dea/publications/rtt-grr-2005/2-eng.php</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 Rural Think Tank 2005 - Understanding issues families face living in rural and remote communities
Date
A point or period of time associated with an event in the lifecycle of the resource
2007
Subject
The topic of the resource
Employment; BENEFITS OF RURAL LIVING; CHALLENGE; Economic; Food Security; INVERSE CARE LAW; SENSE OF COMMUNITY; Transportation
Creator
An entity primarily responsible for making the resource
Public Health Agency of Canada Government of Canada
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
BENEFITS OF RURAL LIVING
Challenge
Economic
Employment
Food Security
INVERSE CARE LAW
Journal Article
Public Health Agency of Canada Government of Canada
SENSE OF COMMUNITY
Transportation
-
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://www12.statcan.gc.ca/census-recensement/2006/as-sa/97-563/p36-eng.cfm#01" target="_blank" rel="noreferrer">http://www12.statcan.gc.ca/census-recensement/2006/as-sa/97-563/p36-eng.cfm#01</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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Earnings and Incomes of Canadians Over the Past Quarter Century, 2006 Census-- Incomes of families--Low Income
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
PPC Book Chapter 2011 (Kim Widger); Employment; tax
Creator
An entity primarily responsible for making the resource
Statistics Canada Government of Canada
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
2009
2009
Backlog
Employment
Journal Article
PPC Book Chapter 2011 (Kim Widger)
Statistics Canada Government of Canada
tax
-
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.2006-0439" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2006-0439</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
Physical and mental health of mothers caring for a child with Rett syndrome
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
2006
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Emotions; Mother-Child Relations; Middle Aged; Family Relations; Health Status; Mental Health; Family Health; adolescent; Preschool; Caregivers/psychology; Psychological; Stress; social support; disabled children; Telemeres; Employment; Fractures; Bone/etiology/nursing; Rett Syndrome/complications/nursing
Creator
An entity primarily responsible for making the resource
Laurvick CL; Msall ME; Silburn S; Bower C; de Klerk N; Leonard H
Description
An account of the resource
OBJECTIVES: Our goal was to investigate the physical and mental health of mothers who care for a child with Rett syndrome. METHODS: We assessed maternal physical and mental health by using the SF-12 version 1 physical component summary and mental component summary scores as the outcome measures of interest. Mothers (n = 135) of children with Rett syndrome completed the SF-12 measure as part of the Australian Rett Syndrome Study in 2002. The analysis investigated linear relationships between physical and mental health scores and maternal, family, and child characteristics. RESULTS: Mothers ranged in age from 21 to 60 years and their children from 3 to 27 years. Nearly half of these mothers (47.4%) indicated that they worked full-time or part-time outside the home, and 41% had a combined family (gross) income of <40,000 Australian dollars. The resultant model for physical health demonstrated that the following factors were positively associated with better maternal physical health: the mother working full-time or part-time outside the home, having some high school education, having private health insurance, the child not having breathing problems in the last 2 years, the child not having home-based structured therapy, and high scores on the Family Resource Scale (indicating adequacy of time resources for basic and family needs). The resultant model for mental health demonstrated that the following factors were positively associated with better maternal mental health: the mother working full-time or part-time outside the home, the child not having a fracture in the last 2 years, lesser reporting of facial stereotypes and involuntary facial movements, being in a well-adjusted marriage, and having low stress scores. CONCLUSIONS: Our study suggests that the most important predictors of maternal physical and emotional health are child behavior, caregiver demands, and family function.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2006-0439" target="_blank" rel="noreferrer">10.1542/peds.2006-0439</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2006
Adolescent
Adult
Backlog
Bone/etiology/nursing
Bower C
Caregivers/psychology
Child
de Klerk N
Disabled Children
Emotions
Employment
Family Health
Family Relations
Female
Fractures
Health Status
Humans
Journal Article
Laurvick CL
Leonard H
Male
Mental Health
Middle Aged
Mother-child Relations
Msall ME
Pediatrics
Preschool
Psychological
Rett Syndrome/complications/nursing
Silburn S
Social Support
Stress
Telemeres
-
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/10.1046/j.1365-2214.2002.00267.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1365-2214.2002.00267.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
Financial effects for families after the death of a disabled or chronically ill child: a neglected dimension of bereavement
Publisher
An entity responsible for making the resource available
Child: Care, Health And Development
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Child; Humans; Family; Income; bereavement; Chronic disease; Parent caregivers; disabled children; Employment
Creator
An entity primarily responsible for making the resource
Corden A; Sloper P; Sainsbury R
Description
An account of the resource
AIM: To investigate the financial circumstances of families whose child had died after a long-term illness and the factors contributing to financial difficulties. RESEARCH METHODS: Qualitative exploration involved semi-structured interviews with a purposive sample of 16 families whose child had died in the last 2 years and who were in touch with a children's hospice. RESULTS: All parents were affected by loss of or reduction in social security benefits. This could result in an immediate drop in income of as much as 72%. Paying for funerals and headstones could be hard. Financial problems after the child's death often had origins in the period of care, when parents had reduced incomes but faced extra costs of care. Some families had got into debt. Re-engaging with employment could be a slow process, and it was not clear where professional responsibility lay in providing financial advice and support. Insensitive treatment by administrative agencies increased problems for parents. DISCUSSION: Findings provide further evidence of the financial impact for families of caring for severely disabled children. This study shows how this impact can extend far into the period after death. Findings indicate the need for financial advice and support to families both during the period of care and after bereavement.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1365-2214.2002.00267.x" target="_blank" rel="noreferrer">10.1046/j.1365-2214.2002.00267.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
2002
Backlog
Bereavement
Child
Child: Care, Health and Development
Chronic Disease
Corden A
Disabled Children
Employment
Family
Humans
Income
Journal Article
Parent caregivers
Sainsbury R
Sloper 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/10.1136/adc.64.5.697" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.64.5.697</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
Life threatening illness and hospice care.
Publisher
An entity responsible for making the resource available
Archives Of Disease In Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
1989
Subject
The topic of the resource
Child; Humans; Attitude to Health; Parents; Professional-Family Relations; Longitudinal Studies; Hospices; Consumer Satisfaction; Respite Care; Family Health; adolescent; Preschool; Non-U.S. Gov't; Research Support; bereavement; retrospective studies; social support; Terminal Care/psychology; Marriage; Employment; Mental Disorders/psychology
Creator
An entity primarily responsible for making the resource
Stein A; Forrest GC; Woolley H; Baum JD
Description
An account of the resource
A retrospective study was undertaken of 25 families and their 26 ill children attending the first children's hospice in the United Kingdom. The study examined the family's perceptions of the care offered and the impact of chronic and life threatening illness. Eighteen (72%) of the families felt they had been well supported by the hospice and valued the family like atmosphere, perceiving the staff to be friendly, approachable, and helpful. The actual nature of hospice care, in an environment with other terminally ill children, was, however, considered a drawback for a few families. A number of families still had unmet needs, notably appropriate child minding when away from the hospice. The impact of chronic life threatening illness on the families was substantial. The parents (particularly the mothers), the index children, and their siblings all experienced much higher levels of psychological symptomatology than would have been expected from normal samples. While families felt greatly helped over symptom control, a proportion remained very worried about certain symptoms, particularly breathlessness, seizures, and pain. A high proportion of families were experiencing financial and employment difficulties as a result of their children's illnesses.
1989
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.64.5.697" target="_blank" rel="noreferrer">10.1136/adc.64.5.697</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
1989
Adolescent
Archives of Disease in Childhood
Attitude To Health
Backlog
Baum JD
Bereavement
Child
Consumer Satisfaction
Employment
Family Health
Forrest GC
Hospices
Humans
Journal Article
Longitudinal Studies
Marriage
Mental Disorders/psychology
Non-U.S. Gov't
Parents
Preschool
Professional-family Relations
Research Support
Respite Care
Retrospective Studies
Social Support
Stein A
Terminal Care/psychology
Woolley H