1
40
3
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Text
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Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1080/0269905021000010096" target="_blank" rel="noreferrer">http://doi.org/10.1080/0269905021000010096</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
Parental stress and burden following traumatic brain injury amongst children and adolescents.
Publisher
An entity responsible for making the resource available
Brain Injury
Date
A point or period of time associated with an event in the lifecycle of the resource
2003
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; England; Questionnaires; Follow-Up Studies; Health Status; Longitudinal Studies; Mental Health; Cost of Illness; Analysis of Variance; Health Education; Family Health; Family Characteristics; Stress; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Comparative Study; Parents/psychology; poverty; Brain Injuries/economics/psychology; Psychological/etiology
Creator
An entity primarily responsible for making the resource
Hawley CA; Ward AB; Magnay AR; Long J
Description
An account of the resource
PRIMARY OBJECTIVES: To assess parental stress following paediatric traumatic brain injury (TBI), and examine the relationship between self-reported problems, parental stress and general health. RESEARCH DESIGN: Parents of 97 children admitted with a TBI (49 mild, 19 moderate, 29 severe) to North Staffordshire National Health Service Trust, and parents of 31 uninjured children were interviewed and assessed. METHODS AND PROCEDURES: Structured interviews were carried out with families, and parents assessed on the Parenting Stress Index (PSI/SF) and General Health Questionnaire (GHQ-12) at recruitment, and repeated 12 months later. MAIN OUTCOMES AND RESULTS: Forty parents (41.2%) of children with TBI exhibited clinically significant stress. Regardless of injury severity, parents of injured children suffered greater stress than control parents as measured by the PSI/SF (p = 0.001). There was a highly significant relationship between number of problems reported and level of parental stress (p = 0.001). Financial burden was related to severity of TBI. At follow-up, one third of parents of children with severe TBI scored > or =18 on the GHQ-12, signifying poor psychological health. CONCLUSIONS: The parents of a child with serious TBI should be screened for abnormal levels of stress. Parental stress and family burden may be alleviated by improved information, follow-up and support.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/0269905021000010096" target="_blank" rel="noreferrer">10.1080/0269905021000010096</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
2003
Adaptation
Adolescent
Adult
Analysis of Variance
Backlog
Brain Injuries/economics/psychology
Brain Injury
Child
Comparative Study
Cost Of Illness
England
Family Characteristics
Family Health
Female
Follow-up Studies
Hawley CA
Health Education
Health Status
Humans
Journal Article
Long J
Longitudinal Studies
Magnay AR
Male
Mental Health
Non-U.S. Gov't
Parents/psychology
Poverty
Preschool
Psychological
Psychological/etiology
Questionnaires
Research Support
Stress
Ward AB
-
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.parkreldis.2012.06.013" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.parkreldis.2012.06.013</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Palliative care for advanced Parkinson disease: An interdisciplinary clinic and new scale, the ESAS-PD
Publisher
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Parkinsonism & Related Disorders
Date
A point or period of time associated with an event in the lifecycle of the resource
2012
Creator
An entity primarily responsible for making the resource
Miyasaki JM; Long J; Mancini D; Moro E; Fox SH; Lang AE; Marras C; Chen R; Strafella A; Arshinoff R; Ghoche R; Hui J
Description
An account of the resource
Palliative care provides a holistic approach to symptom relief using a multidisciplinary team approach to enhance quality of life throughout the entire course of a particular illness. The care team consists of movement disorders neurologist, a palliative care physician, a wound care nurse, a spiritual counselor and a care coordinator. Palliative care concepts were applied to a group of advanced Parkinson disease (PD) patients in a dedicated Palliative Care Clinic. METHODS: A modified Edmonton Symptom Assessment System Scale for PD (ESAS-PD) was developed and applied to 65 PD patients at their initial consultation and following recommended interventions. Scores were compared to those of metastatic cancer patients reported in the palliative care literature. RESULTS: The ESAS-PD scores significantly improved after the interventions (56 and 40 respectively, p = 0.0001). The most improved items were constipation, dysphagia, anxiety, pain and drowsiness. ESAS-PD scores were not significantly different from metastatic cancer patients' ESAS scores. CONCLUSIONS: ESAS-PD is a quick, effective scale for assessment of late stage PD symptoms. Scores are sensitive to intervention, and therefore have potential clinical utility for physicians and other healthcare providers. Advanced PD patients have a similar degree of symptoms as metastatic cancer patients, respond to treatment in a similar way, and therefore should have access to palliative care services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.parkreldis.2012.06.013" target="_blank" rel="noreferrer">10.1016/j.parkreldis.2012.06.013</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
2012
Arshinoff R
Backlog
Chen R
Fox SH
Ghoche R
Hui J
Journal Article
Lang AE
Long J
Mancini D
Marras C
Miyasaki JM
Moro E
Parkinsonism & Related Disorders
Strafella 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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February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13925</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 do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis
Publisher
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Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness
Creator
An entity primarily responsible for making the resource
Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M
Description
An account of the resource
Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</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
Adolescent
Adverse Drug Reaction
Aged
Article
Burgess A
Child
Child Parent Relation
Controlled Study
Disability
Drug Therapy
February List 2024
Female
Health Care System
Health Expectations
Hospital care
Human
Intellectual Impairment
Interpersonal Communication
Interview
kindness
Long J
Lucien A
Male
Ong N
Palliative Therapy
Parent
Patient Safety
Pediatric Hospital
Preschool Child
Qualitative Research
School Child
Semi Structured Interview
Side Effect
special situation for pharmacovigilance
Thematic Analysis
Walton M
Weise J