1
40
1
-
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/10.1177/0269216312455729" target="_blank" rel="noreferrer">http://doi.org/10.1177/0269216312455729</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 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions
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
2013
Subject
The topic of the resource
Humans; Palliative Care; Family; social support; caregivers; Cost of Illness; Stress; quality of life; Psychological; Motor Neuron Disease
Creator
An entity primarily responsible for making the resource
Aoun SM; Bentley B; Funk L; Toye C; Grande G; Stajduhar KJ
Description
An account of the resource
BACKGROUND: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. AIM: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. DESIGN: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000-April 2011. Fifty-nine studies met the inclusion criteria. RESULTS: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. CONCLUSIONS: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.
2013-05
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/0269216312455729" target="_blank" rel="noreferrer">10.1177/0269216312455729</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2013
Aoun SM
Backlog
Bentley B
Caregivers
Cost Of Illness
Family
Funk L
Grande G
Humans
Journal Article
Motor Neuron Disease
Palliative Care
Palliative Medicine
Psychological
Quality Of Life
Social Support
Stajduhar KJ
Stress
Toye C