1
40
8
-
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
April 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
April List 2024
URL Address
<a href="http://doi.org/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-024-01345-2</a>
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Title
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Exploring spirituality, religion and life philosophy among parents of children receiving palliative care: a qualitative study
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2024
Subject
The topic of the resource
child; Palliative Care; adult; article; female; human; male; palliative therapy; aged; coping; knowledge; Spain; personal experience; terminal disease; parent; qualitative research; health care personnel; decision making; interview; pediatric hospital; clinician; religion; philosophy; religiosity; Southern European
Creator
An entity primarily responsible for making the resource
Miquel P; Clemente I; Ciccorossi M
Description
An account of the resource
Background: Few studies have examined the spiritual environment of parents of children receiving palliative care in Southern European countries, which are mostly characterized by secularization (or the abandonment of traditional religiosity) and an increase of cultural and religious diversities resulting in a much broader spectrum of spiritual and religious beliefs. This study aimed to explore the parents' own spirituality, religiosity, and philosophy of life in coping with the care of their child with palliative needs. Methods: Qualitative interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona, Spain. Inclusion criteria were parents of children who have been cared for the palliative care program for a minimum of 3 months and who displayed a willingness to talk about their personal experiences and gave written consent. Interviews were audio-recorded, transcribed by an independent service, and analyzed on a case-by-case basis using Interpretative Phenomenological Analysis. Results: The three domains identified were life philosophy, relational, and transcendent. Life philosophy included principles that guided parents' decision-making, and how the onset of their child's serious illness had promoted a change in their values. Relational was focused on how they perceived themselves (e.g. motherhood), others (e.g. one's own child exceptionality), and the way they believed others perceived and supported them (e.g. relatives, friends, and healthcare providers). The transcendent domain involved God-related concepts, divinity and divine intervention (e.g. a miracle as an interpretive framework for that which cannot be explained within scientific knowledge limitations). Conclusions: Inflexible categories identifying parents as having a particular religious faith tradition are not sufficient to capture the interrelation of knowledges (ethical, religious, scientific) that each parent generates when faced with their child receiving palliative care. Clinicians should explore parents' spirituality in an individualized way that responds to the uniqueness of their experiential process.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1186/s12904-024-01345-2" target="_blank" rel="noreferrer noopener">10.1186/s12904-024-01345-2</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).
2024
Adult
Aged
April List 2024
Article
BMC Palliative Care
Child
Ciccorossi M
Clemente I
Clinician
Coping
Decision Making
Female
Health Care Personnel
Human
Interview
Knowledge
Male
Miquel P
Palliative Care
Palliative Therapy
Parent
Pediatric Hospital
Personal Experience
Philosophy
Qualitative Research
Religion
religiosity
Southern European
Spain
terminal disease
-
Dublin Core
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Title
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October 2019 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
October 2019 List
URL Address
<a href="http://doi.org/10.23736/S1973-9087.19.05474-1" target="_blank" rel="noreferrer noopener">http://doi.org/10.23736/S1973-9087.19.05474-1</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
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The impact of home-based physical rehabilitation program on parents' experience with children in palliative care: a qualitative study
Publisher
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European journal of physical and rehabilitation medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
adult; article; child; human; palliative therapy; genetic transcription; qualitative research; thematic analysis; home environment; pain; quality of life; education; young adult; semi structured interview; practice guideline; Spain
Creator
An entity primarily responsible for making the resource
Rico-Mena P; Palacios-Cena D; Martino-Alba R; Chocarro-Gonzalez L; Gueita-Rodriguez J
Description
An account of the resource
BACKGROUND: Pediatric palliative care programs aim to improve the quality of life of children with severe life-threatening illnesses, and that of their families. Although rehabilitation and physical therapy provides a valuable tool for the control of symptoms, it has been poorly researched to date. Since the family represents such a fundamental support in these cases, it is important to deepen our understanding regarding the value of implementing rehabilitation programs from the parents' perspective. AIM: The aim of this paper was to explore parents' experiences regarding the implementation of a physical rehabilitation program in pediatric palliative care. DESIGN: A qualitative methodology was chosen. SETTING: The unit of pediatric palliative care at the Hospital Nino Jesus (Madrid, Spain). POPULATION: The inclusion criteria were: 1) parents of children, irrespective of their diagnosis; 2) integrated within the program of palliative care at the time of study; 3) aged between 0-18 years; 4) must be receiving Home-Based Rehabilitation Program by the Pediatric Palliative Care team. Fourteen parents were included. METHOD(S): Purposeful sampling method was implemented. Data collection consisted of unstructured and semi-structured interviews. A thematic analysis was performed to interpret transcripts. Guidelines for conducting qualitative studies established by the Consolidated Criteria for Reporting Qualitative Research were followed. RESULT(S): Three main themes were identified: 1) the meaning of physical rehabilitation to parents; 2) physical rehabilitation as an opportunity for patients to stay in their home environment; and 3) home-based physical rehabilitation as part of the families' social environment. CONCLUSION(S): The main needs of a home physical rehabilitation program are to decrease pain and suffering, together with improving family education and training. CLINICAL REHABILITATION IMPACT: The experience of rehabilitation programs at home is essential in order to improve both the quality of life and the quality of care of affected children and parents.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.23736/S1973-9087.19.05474-1" target="_blank" rel="noreferrer noopener">10.23736/S1973-9087.19.05474-1</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).
2019
Adult
Article
Child
Chocarro-Gonzalez L
Education
European journal of physical and rehabilitation medicine
genetic transcription
Gueita-Rodriguez J
home environment
Human
Martino-Alba R
October 2019 List
Pain
Palacios-Cena D
Palliative Therapy
Practice Guideline
Qualitative Research
Quality Of Life
Rico-Mena P
Semi Structured Interview
Spain
Thematic Analysis
Young Adult
-
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 2019 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
March 2019 List
URL Address
<a href="http://doi.org/10.12968/ijpn.2019.25.1.19" target="_blank" rel="noreferrer noopener"> http://doi.o rg/10.12968/ijpn.2019.25.1.19</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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A grounded theory study of the perceptions and meanings associated with gastrostomies among parents of children with palliative needs
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
2019
Subject
The topic of the resource
Spain; semi structured interview; perception; palliative therapy; genetic transcription; human; article; child; problem solving; patient care; decision making; grounded theory; stomach tube
Creator
An entity primarily responsible for making the resource
Chocarro L; Moreno A; Barcelo M; Martino R; Gonzalez P
Identifier
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<a href="http://doi.org/10.12968/ijpn.2019.25.1.19" target="_blank" rel="noreferrer noopener"> 10.12968/ijpn.2019.25.1.19</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).
Description
An account of the resource
BACKGROUND:: There is few literature on the difficulties and different meanings of gastrostomy tubes (GST) for parents of children with palliative needs, and what specific palliative care teams contribute to this process. AIM:: To explore the process of information in the decision of performing a gastrostomy and the meanings that parents of children with palliative needs build around them. DESIGN:: Semi-structured interviews which were transcribed and analysed using Grounded Theory. SETTING/PARTICIPANTS:: Parents and caretakers of children admitted in Paediatric Palliative Care Unit of Madrid Autonomous Community (Spain) whose children bore a gastrostomy device.
2019
Article
Barcelo M
Child
Chocarro L
Decision Making
genetic transcription
Gonzalez P
Grounded Theory
Human
International Journal of Palliative Nursing
March 2019 List
Martino R
Moreno A
Palliative Therapy
Patient Care
Perception
Problem Solving
Semi Structured Interview
Spain
stomach tube
-
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.ejon.2013.04.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejon.2013.04.004</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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Suffering indicators in terminally ill children from the parental perspective
Publisher
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European Journal Of Oncology Nursing: The Official Journal Of European Oncology Nursing Society
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Child; Female; Humans; Male; Neoplasms; Terminal Care; Terminally Ill; Adult; Parent-Child Relations; Parents; Interviews as Topic; Attitude to Death; Qualitative Research; Spain; Stress; quality of life; Adaptation; Psychological
Creator
An entity primarily responsible for making the resource
Montoya-Juárez R; García-Caro MP; Schmidt-Rio-Valle J; Campos-Calderón C; Sorroche-Navarro C; Sánchez-García R; Cruz-Quintana F
Description
An account of the resource
PURPOSE: Suffering is a complex multifaceted phenomenon, which has received limited attention in relation to children with terminal illness. As part of a wider study we interviewed parents of children with terminal illness to elicit their perspectives on suffering, in order to provide initial understanding from which to develop observational indicators and further research. METHODS: Qualitative descriptive study with semi-structured interviews made "ad hoc". Selection through deliberate sampling of mothers and fathers of hospitalised children (0-16 years old) with a terminal illness in Granada (Spain). KEY RESULTS: 13 parents were interviewed. They described children's suffering as manifested through sadness, apathy, and anger towards their parents and the professionals. The isolation from their natural environment, the uncertainty towards the future, and the anticipation of pain caused suffering in children. The pain is experienced as an assault that their parents allow to occur. CONCLUSIONS: The analysis of the interview with the parents about their perception of their ill children's suffering at the end of their lives is a valuable source of information to consider supportive interventions for children and parents in health care settings. An outline summary of the assessed aspects of suffering, the indicators and aspects for health professional consideration is proposed.
2013-12
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejon.2013.04.004" target="_blank" rel="noreferrer">10.1016/j.ejon.2013.04.004</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
2013
Adaptation
Adult
Attitude To Death
Backlog
Campos-Calderón C
Child
Cruz-Quintana F
European Journal Of Oncology Nursing: The Official Journal Of European Oncology Nursing Society
Female
García-Caro MP
Humans
Interviews As Topic
Journal Article
Male
Montoya-Juárez R
Neoplasms
Parent-child Relations
Parents
Psychological
Qualitative Research
Quality Of Life
Sánchez-García R
Schmidt-Rio-Valle J
Sorroche-Navarro C
Spain
Stress
Terminal Care
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/10.2165/00044011-200727090-00005" target="_blank" rel="noreferrer">http://doi.org/10.2165/00044011-200727090-00005</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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Cost-effectiveness analysis of ziprasidone versus haloperidol in sequential intramuscular/oral treatment of exacerbation of schizophrenia: economic subanalysis of the ZIMO trial.
Publisher
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Clinical Drug Investigation
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; Adult; Treatment Outcome; Drug Therapy; Research Design; Cost-Benefit Analysis; Cost of Illness; Spain; quality of life; Administration; Oral; IM; Injections; Intramuscular; Drug Costs; Haloperidol/ad [Administration & Dosage]; Combination; Hospital Costs; Antipsychotic Agents/ad [Administration & Dosage]; Antipsychotic Agents/ec [Economics]; Brief Psychiatric Rating Scale; Haloperidol/ec [Economics]; Length of Stay/ec [Economics]; Piperazines/ad [Administration & Dosage]; Piperazines/ec [Economics]; Schizophrenia/dt [Drug Therapy]; Schizophrenia/ec [Economics]; Thiazoles/ad [Administration & Dosage]; Thiazoles/ec [Economics]
Creator
An entity primarily responsible for making the resource
Canas F; Perez-Sola V; Diaz S; Rejas J; ZIMO Trial Collaborative Group
Description
An account of the resource
OBJECTIVE: This study aimed to assess the cost effectiveness of ziprasidone versus haloperidol in sequential intramuscular (IM)/oral treatment of patients with exacerbation of schizophrenia in Spain. METHODS: A cost-effectiveness analysis from the hospital perspective was performed. Length of stay, study medication and use of concomitant drugs were calculated using data from the ZIMO trial. The effectiveness of treatment was determined by the percentage of responders (reduction in baseline Brief Psychiatric Rating Scale [BPRS] negative symptoms subscale >or=30%). Economic assessment included estimation of mean (95% CI) total costs, cost per responder and the incremental cost-effectiveness ratio (ICER) per additional responder. The economic uncertainty level was controlled by resampling and calculation of cost-effectiveness acceptability curves. RESULTS: A total of 325 patients (ziprasidone n = 255, haloperidol n = 70) were included in this economic subanalysis. Ziprasidone showed a significantly higher responder rate compared with haloperidol (71% vs 56%, respectively; p = 0.023). Mean total costs were euro3582 (95% CI 3226, 3937) for ziprasidone and euro2953 (95% CI 2471, 3436) for haloperidol (p = 0.039), mainly due to a higher ziprasidone acquisition cost. However, costs per responder were lower with ziprasidone (euro5045 [95% CI 4211, 6020]) than with haloperidol (euro5302 [95% CI 3666, 7791], with a cost per additional responder (ICER) for ziprasidone of euro4095 (95% CI -130, 22 231). The acceptability curve showed an ICER cut-off value of euro13 891 at the 95% cost-effectiveness probability level for >or=30% reduction in BPRS negative symptoms. CONCLUSIONS: Compared with haloperidol, ziprasidone was significantly better at controlling psychotic negative symptoms in acute psychoses. The extra cost of ziprasidone was offset by a higher effectiveness rate, yielding a lower cost per responder. In light of the social benefit (less family burden and greater restoration of productivity), the incremental cost per additional responder with sequential IM/oral ziprasidone should be considered cost effective in patients with exacerbation of schizophrenia in Spain.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2165/00044011-200727090-00005" target="_blank" rel="noreferrer">10.2165/00044011-200727090-00005</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
Administration
Adult
Antipsychotic Agents/ad [Administration & Dosage]
Antipsychotic Agents/ec [Economics]
Backlog
Brief Psychiatric Rating Scale
Canas F
Clinical Drug Investigation
Combination
Cost Of Illness
Cost-Benefit Analysis
Diaz S
Drug Costs
Drug Therapy
Female
Haloperidol/ad [Administration & Dosage]
Haloperidol/ec [Economics]
Hospital Costs
Humans
IM
Injections
Intramuscular
Journal Article
Length of Stay/ec [Economics]
Male
Oral
Perez-Sola V
Piperazines/ad [Administration & Dosage]
Piperazines/ec [Economics]
Quality Of Life
Rejas J
Research Design
Schizophrenia/dt [Drug Therapy]
Schizophrenia/ec [Economics]
Spain
Thiazoles/ad [Administration & Dosage]
Thiazoles/ec [Economics]
Treatment Outcome
ZIMO Trial Collaborative Group
-
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/10.1007/s11136-004-0794-y" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11136-004-0794-y</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
Quality of life related to type 1 Gaucher disease: Spanish experience
Publisher
An entity responsible for making the resource available
Quality of Life Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Humans; Questionnaires; Prospective Studies; Spain; quality of life; IM; Exercise; Gaucher Disease/pp [Physiopathology]
Creator
An entity primarily responsible for making the resource
Giraldo P; Solano V; Perez-Calvo JI; Giralt M; Rubio-Felix D; Spanish Group on Gaucher disease
Description
An account of the resource
The impact of type 1 Gaucher disease and its therapy on health-related quality of life (QOL) was investigated and the results were compared with a Spanish adult normative group. PATIENTS AND METHODS: Between January 1998 and December 2002, a prospective clinical QOL trial was conducted by application of a Spanish version of the Health Survey SF-36 questionnaire. Patients receiving ERT (69 cases) filled in the questionnaire two times, prior to starting ERT and after two years under ERT. The patients were stratified by gender and age group. Clinical and X-ray data to assess bone disease were obtained from the Spanish Gaucher Register. Demographic, clinical, genotype and analytical data and the response to therapy were evaluated. Four grades of severity were established according to bone disease (no symptoms = 0, moderate bone pain = 1, severe bone crisis = 2, fracture/necrosis = 3). Correlation analysis was made between QOL score and grade of bone disease. RESULTS: Mean age+/-SD 33.6+/-11.7 (range 18-66), M/F,ratio 33/36; bone disease: 0 in 27 patients (47.3%), 1 in 11 (19.3%), 2 in 5 (8.8%) and 3 in 14 (24.5%). Physical activity: 11 patients (19.3%) showed severe restriction and 41 patients (71.9%) were only limited for strenuous activities. The mean score for QOL questionnaire was 11.9+/-10.4 (range 2-46). Correlation between score and bone disease was significant only for 1 and 3 grades (p = 0.02). Improvement in self perception of global health was observed ranging from 34.3% before ERT to 91.4% after ERT (p = 0.001). Nevertheless physical activity remained unsatisfactory in 24.5% of patients due mainly to bone sequelae. COMMENTS: Physical activities and bone disease grade 1 and 3 are negatively related to QOL. Nevertheless no correlation was found with bone pain crisis, possibly due to the transitory character of this event. In spite of the improvement induced by ERT, a quarter of patients remained with physical limitations related to bone disease as well as in need of orthopaedic correction of bone sequelae. In order to improve the QOL an accurate evaluation of bone disease to define therapeutic approaches must be considered.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1007/s11136-004-0794-y" target="_blank" rel="noreferrer">10.1007/s11136-004-0794-y</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
Backlog
Exercise
Gaucher Disease/pp [Physiopathology]
Giraldo P
Giralt M
Humans
IM
Journal Article
Perez-Calvo JI
Prospective Studies
Quality Of Life
Quality of Life Research
Questionnaires
Rubio-Felix D
Solano V
Spain
Spanish Group on Gaucher disease
-
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/10.1080/13607863.2010.543658" target="_blank" rel="noreferrer">http://doi.org/10.1080/13607863.2010.543658</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 Spanish version of the dementia quality of life questionnaire: a validation study
Publisher
An entity responsible for making the resource available
Aging & Mental Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2011
Subject
The topic of the resource
Female; Humans; Male; Aged; Middle Aged; Severity of Illness Index; European Continental Ancestry Group; Sensitivity and Specificity; Reproducibility of Results; Spain; Diagnostic and Statistical Manual of Mental Disorders; Language; 80 and over; Quality of Life/psychology; Questionnaires/standards; Dementia/diagnosis/physiopathology/psychology; Psychometrics/instrumentation; Translations
Creator
An entity primarily responsible for making the resource
Lucas-Carrasco R; Gomez-Benito J; Rejas J; Brod M
Description
An account of the resource
BACKGROUND: The aim of the study was to adapt and validate culturally the dementia-specific health-related quality of life instrument (HRQoL) into Spanish for patients with mild to moderate dementia. METHODS: Two forward translations, a reconciled version, and then a back translation were completed and subjected to expert review. A total of 112 patients with dementia, diagnosed according to DSM-IV criteria, from six centres providing care for persons with dementia in Spain participated in the study. The following patient-reported information was obtained by interview: demographics, subjective perception of health, depressive symptoms (Geriatric Depression Scale-15; GDS-15), functional ability (Barthel Index), and both generic (World Health Organization Quality of Life; WHOQOL-BREF) and dementia-specific quality of life (DQoL). RESULTS: The Spanish version of the DQoL showed acceptable psychometric properties. Internal consistency (Cronbach's alpha) was acceptable for most of the DQoL scales. As expected, associations were found between DQoL scales and the WHOQOL-BREF psychological domain and the GDS-15, indicating good validity. Neither functional status nor severity of dementia was associated with QoL; but depressive symptoms and self-reported feeling ill had a negative association on QoL. CONCLUSIONS: The results showed that the Spanish version of the DQoL has comparable psychometric properties to the US version. The DQoL appears to be a reliable and valid instrument intended to be administered to patients with mild/moderate dementia who are living at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/13607863.2010.543658" target="_blank" rel="noreferrer">10.1080/13607863.2010.543658</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
2011
80 And Over
Aged
Aging & Mental Health
Backlog
Brod M
Dementia/diagnosis/physiopathology/psychology
Diagnostic and Statistical Manual of Mental Disorders
European Continental Ancestry Group
Female
Gomez-Benito J
Humans
Journal Article
Language
Lucas-Carrasco R
Male
Middle Aged
Psychometrics/instrumentation
Quality Of Life/psychology
Questionnaires/standards
Rejas J
Reproducibility of Results
Sensitivity and Specificity
Severity Of Illness Index
Spain
Translations
-
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
May 2017 List
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
Mechanical Ventilation In Children With Life-limiting Conditions
Publisher
An entity responsible for making the resource available
European Respiratory Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Artificial Ventilation; Adult; Cancer Epidemiology; Cerebral Palsy; Child; Chromosome Disorder; Cognitive Defect; Controlled Study; Cross-sectional Studies; Cross-sectional Study; Death; Follow Up; Human; Lung Disease; Major Clinical Study; Mucopolysaccharidosis; Neuromuscular Disease; Only Child; Palliative Care; Palliative Therapy; Quality Of Life; Respiration Artificial; Respiratory Insufficiency; Spain; University Hospital; Ventilators Mechanical; Young Adult
Creator
An entity primarily responsible for making the resource
Gaboli M; Pecellin ID; Garrido MM; Cantero EQ; Carro CC; Rodriguez LMR; Valencia JPG
Description
An account of the resource
Background: Respiratory insufficiency in children with life-limiting and life-threatening conditions is common, it has a lasting impact, yet there is a paucity of evidence to guide clinicians in its management with home support. Objectives: Our aim was to review palliative indication of home mechanical ventilation (HMV) in Southwestern Spain. Methods: Descriptive cross-sectional study including pediatric patients (aged 0 to 18 years) who were being taken care by the HMV program at the University Hospital Virgen del Rocio in Seville between 2000 and 2015. Results: A total of 78 patients were analyzed, 22 on invasive ventilation (10 with 24 hours/day) and 56 on no invasive ventilation. Duration of HMV varies from 2 days to 15 years. According to standards for pediatric palliative care in Europe, 12 patients suffered from life-threatening illness, (group 1; 4 cancer, 8 no progressive lung disease), 17 had conditions in which premature death is inevitable (group 2; 3 mucopolysaccharidosis, 14 malformative syndrome or chromosomopathy), 38 had progressive conditions without curative options (group 3; 30 neuromuscular diseases, 8 neurological progressive disease of unknown origin), 7 had irreversible but not progressive conditions (group 4; cerebral palsy). When HMV was started 17 patients had severe cognitive impairment, and HMV was indicated to improve quality of life by reducing hospital visits. During follow up, 3 patients died and 3 were weaned from HMV (group 1). Only 4 patients were included in a pediatric palliative care program. Conclusions: Up to 95% of patients with HMV can benefit from palliative care. HMV in children with chronic conditions aims to ameliorate their quality of life, but may pose ethical dilemmas.
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10.1183/13993003.congress-2016.OA248
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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).
2016
Adult
Artificial Ventilation
Cancer Epidemiology
Cantero EQ
Carro CC
Cerebral Palsy
Child
Chromosome Disorder
Cognitive Defect
Controlled Study
Cross-sectional Studies
Cross-sectional Study
Death
European Respiratory Journal
Follow Up
Gaboli M
Garrido MM
Human
Lung Disease
Major Clinical Study
May 2017 List
Mucopolysaccharidosis
Neuromuscular Disease
Only Child
Palliative Care
Palliative Therapy
Pecellin ID
Quality Of Life
Respiration Artificial
Respiratory Insufficiency
Rodriguez LMR
Spain
University Hospital
Valencia JPG
Ventilators Mechanical
Young Adult