1
40
38
-
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
2023 Special Edition 5 - Low Resource Setting 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
2023 SE5 - Low Resource Setting
URL Address
<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener"> http://doi.org/10.25259/IJPC_20_2021</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
Setting-up a Supportive and Palliative Care Service for Children with Life-threatening Illnesses in Maharashtra -- Children's Palliative Care Project in India
Publisher
An entity responsible for making the resource available
Indian Journal of 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
Collaboration; Child; Pain; Hospitals Pediatric; Critical Illness; Female; Male; Palliative Care; Quality of Life; Questionnaires; Needs Assessment; Data Collection; Cognition; Health Services Accessibility; Education; Community Health Services; Program Implementation; Child Advocacy; Human; India; Symptoms; Administration; International Agencies; Licensure; Pediatric Care; Only Child; In Infancy and Childhood; Academic Performance; Health and Welfare Planning; Health Facility Administrators; Personnel Health Facility; Psychosocial Functioning; Teamwork
Creator
An entity primarily responsible for making the resource
Muckaden MA; Ghoshal A; Talawadekar P; Marston JM; Paleri AK
Description
An account of the resource
Objectives: To describe the key initiatives that were successful in planning and implementing hospital- and community-based Paediatric Palliative Care (PPC) services designed for a resource-limited setting in Maharashtra, India, in collaboration with DfID. Materials and Methods: The CPC project was a 5-year service development project (April 2010--March 2015) conducted in Maharashtra, India, developed in collaboration with the Department for International Development (DFID), Hospice UK, International Children's Palliative Care Network (ICPCN), Indian Association of Palliative Care (IAPC) and Tata Memorial Centre, to advocate and care for the needs of children and families with life-limiting illnesses in a non-cancer setting. It was implemented through raising awareness and sensitising hospital administrators and staff about PPC, providing education and training on PPC, team building, and data collection to understand the need for PPC. Results: The total number of children enrolled in the CPC project was 866, 525 (60.6%) were male with a mean age of 9.3 years. Major symptom across sites was mild pain, and serial Quality of Life measurement (through PedsQL questionnaire) showed improvement in social, psychological and school performance. Advocacy with the Ministry of Health helped in procurement of NDPS licenses in district hospitals, and led to access to palliative care for children at policy level. Conclusion: The model of PPC service development can be replicated in other resource-limited settings to include children with life-limiting conditions. The development of pilot programmes can generate interest among local physicians to become trained in PPC and can be used to advocate for the palliative care needs of children.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.25259/IJPC_20_2021" target="_blank" rel="noreferrer noopener">10.25259/IJPC_20_2021</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
2023 SE5 - Low Resource Setting
Academic Performance
Administration
Child
Child Advocacy
Cognition
Collaboration
Community Health Services
Critical Illness
Data Collection
Education
Female
Ghoshal A
Health and Welfare Planning
Health Facility Administrators
Health Services Accessibility
Hospitals Pediatric
Human
In Infancy and Childhood
India
Indian Journal Of Palliative Care
International Agencies
Licensure
Male
Marston JM
Muckaden MA
Needs Assessment
Only Child
Pain
Paleri AK
Palliative Care
Pediatric Care
Personnel Health Facility
Program Implementation
Psychosocial Functioning
Quality Of Life
Questionnaires
Symptoms
Talawadekar P
Teamwork
-
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
February 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
February List 2023
URL Address
<a href="http://doi.org/10.7748/nr.2022.e1849" target="_blank" rel="noreferrer noopener"> http://doi.org/10.7748/nr.2022.e1849</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
Using mobile phones, WhatsApp and phone interviews to explore how children's hospice nurses manage long-term relationships with parents: a feasibility pilot
Publisher
An entity responsible for making the resource available
Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Child; Humans; Pilot Projects; Covid-19; Parents; Cell Phone; data collection; interviews; methodology; research; research methods
Creator
An entity primarily responsible for making the resource
Jane BM; Anstey S; Davies J; Dunn C; Jones A
Description
An account of the resource
BACKGROUND: Mobile phones are familiar to most nurses, but the applications available for voice recording and transfer of audio files in research may not be. AIM: To provide an overview of a pilot study which trialled the use of mobile phones, WhatsApp and phone interviews as a safe and reliable means of collecting data. DISCUSSION: A pilot study was designed to test the use of: mobile phones as a safe and reliable way to record audio diaries as research data; WhatsApp to transmit the audio files; and phone interviews to explore them. Undertaking the pilot demonstrated that the tools proposed for collecting data were useable and acceptable to the target population and that the researcher's guidance for doing so was satisfactory. CONCLUSION: New technologies enable innovation but trialling them for useability is important. Confidentiality and consent need to be carefully managed when using WhatsApp to ensure a study is compliant with data protection regulations. IMPLICATIONS FOR PRACTICE: Collection of research data digitally and remotely has become increasingly mainstream and relied on during the COVID 19 pandemic. The methods discussed in this article provide solutions for timely data collection that are particularly useful when the researcher is geographically distant from participants. The 'in the moment' reflective nature of the audio diaries could also be applicable to non-research settings - for example, as a method of assisting ongoing professional development and/or collection of reflective accounts.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/nr.2022.e1849" target="_blank" rel="noreferrer noopener">10.7748/nr.2022.e1849</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
Anstey S
Cell Phone
Child
COVID-19
Data Collection
Davies J
Dunn C
February List 2023
Humans
Interviews
Jane BM
Jones A
Methodology
Nursing Research
Parents
Pilot Projects
Research
Research Methods
-
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
Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
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.
URL Address
<a href="http://doi.org/10.1034/j.1399-0004.2002.620512.x" target="_blank" rel="noreferrer noopener">http://doi.org/10.1034/j.1399-0004.2002.620512.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
Sleep disturbance in mucopolysaccharidosis type III (Sanfilippo syndrome): a survey of managing clinicians.
Publisher
An entity responsible for making the resource available
Clinical Genetics
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Data Collection; Physicians; Humans; Behavior Therapy; Mucopolysaccharidosis III/complications; Sleep Disorders/complications; Sleep Disorders/drug therapy; Sleep Disorders/therapy; NET Files; sleep disturbance/disorders; MPS III; trajectory; characteristics
Creator
An entity primarily responsible for making the resource
Fraser J; Wraith JE; Delatycki MB
Description
An account of the resource
Sanfilippo syndrome (mucopolysaccharidosis type III) is the commonest mucoploysaccharidosis. It causes neurodegeneration with often profound sleep and behavioral disturbance. Management of the sleep disturbance is difficult and inconsistent. In this study, we surveyed clinicians with particular expertise in the management of individuals with mucopolysaccharidoses. We found that sleep problems are almost universal in this patient population and that no one treatment is consistently viewed as beneficial. Among the clinicians surveyed, melatonin is reported as the medication most likely to be of benefit. Benzodiazepines, chloral hydrate, antihistamines and antipsychotic agents are overall reported as less efficacious. The major side-effect of the medications as a group was reported to be daytime somnolence. Based on this study, recommendations are given regarding the approach to sleep disturbance in Sanfilippo syndrome.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1034/j.1399-0004.2002.620512.x" target="_blank" rel="noreferrer noopener">10.1034/j.1399-0004.2002.620512.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).
2002
Behavior Therapy
characteristics
Clinical Genetics
Data Collection
Delatycki MB
Fraser J
Humans
MPS III
Mucopolysaccharidosis III/complications
NET Files
Physicians
Sleep Disorders/complications
Sleep Disorders/drug therapy
Sleep Disorders/therapy
sleep disturbance/disorders
Trajectory
Wraith 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://doi.org/10.1001/jamapediatrics.2013.2204" target="_blank" rel="noreferrer">http://doi.org/10.1001/jamapediatrics.2013.2204</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
Clinician perspectives regarding the do-not-resuscitate order
Publisher
An entity responsible for making the resource available
Jama Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Female; Humans; Male; decision making; Critical Illness; Data Collection; Attitude of Health Personnel; Physicians; Boston; Resuscitation Orders; Nurses; Heart Arrest; advance care planning
Creator
An entity primarily responsible for making the resource
Sanderson A; Zurakowski D; Wolfe J
Description
An account of the resource
IMPORTANCE: While data exist regarding the frequency and timing of the do-not-resuscitate (DNR) order in children, little is known about clinician attitudes and behaviors regarding this order. OBJECTIVE: To identify clinician attitudes regarding the meaning, implication, and timing of the DNR order for pediatric patients. DESIGN: Physicians and nurses from practice settings where advance care planning typically takes place were surveyed regarding their attitudes and behaviors about DNR orders. RESULTS: In total, 107 physicians and 159 nurses responded to the survey (N = 266). There was substantial variability in the interpretation of the DNR order. Most clinicians (66.9%) believe that a DNR order indicates limitation of resuscitative measures only on cardiopulmonary arrest. In reality, however, more than 85% believe that care changes beyond response to cardiopulmonary arrest, varying from increased attention to comfort to less clinician attentiveness. In addition, most clinicians reported that resuscitation status discussions take place later in the illness course than is ideal. CONCLUSIONS AND RELEVANCE: Clinicians use the DNR order not only as a guide for therapeutic decisions during a cardiopulmonary arrest but also as a surrogate for broader treatment directives. Most clinicians believe that DNR discussions should take place earlier than they actually do. Interventions aimed at improving clinician knowledge and skills in advance care discussions as well as the development of orders that address overall goals of care may improve care for children with serious illness.
2013-10
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jamapediatrics.2013.2204" target="_blank" rel="noreferrer">10.1001/jamapediatrics.2013.2204</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
Advance Care Planning
Attitude Of Health Personnel
Backlog
Boston
Critical Illness
Data Collection
Decision Making
Female
Heart Arrest
Humans
JAMA Pediatrics
Journal Article
Male
Nurses
Physicians
Resuscitation Orders
Sanderson A
Wolfe J
Zurakowski D
-
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.ejpn.2007.06.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.ejpn.2007.06.004</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
A name given to the resource
Parental perception of cold extremities and other accompanying symptoms in children with cerebral palsy
Publisher
An entity responsible for making the resource available
European Journal Of Paediatric Neurology
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; Female; Humans; Male; Adult; Data Collection; Parents; Questionnaires; Health Status; adolescent; Preschool; Pain/etiology; Q3 Literature Search; Body Temperature/physiology; Cerebral Palsy/complications/physiopathology; Constipation/etiology; Extremities/blood supply/physiology; Muscle Tonus/physiology; Sleep Disorders/etiology
Creator
An entity primarily responsible for making the resource
Svedberg LE; Englund E; Malker H; Stener-Victorin E
Description
An account of the resource
Cold extremities have been noted in non-walking children with cerebral damage compared with healthy controls. Whether this is a general problem in children with cerebral palsy (CP) and associated with other symptoms is unknown. This study describes accompanying symptoms such as cold extremities, constipation, pain, sleeping disorders and impaired well-being in children with CP as well as treatment the children have undergone. Associations between cold extremities and other symptoms borne by the children were analysed and discussed. From information in postal surveys received from parents of children with CP, 107 children (60 boys and 47 girls) aged 5-13 years, mean 11 years 8 months (SD 2 years 11 months), were described and analysed. Besides neurological impairments, many children had cold extremities and pain, sleeping disorders, constipation, and impaired well-being. Most children had had one or more of these symptoms for over 1 year but the symptoms were largely untreated. Non-walkers generally had more symptoms than walkers. Although pain, constipation, and sleeping disorders may have different underlying causes in children with CP, these symptoms might also be mediated or aggravated by dysfunction in the autonomic nervous system. To improve the child's well-being, early recognition and treatment of accompanying symptoms is important.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.ejpn.2007.06.004" target="_blank" rel="noreferrer">10.1016/j.ejpn.2007.06.004</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
Adult
Backlog
Body Temperature/physiology
Cerebral Palsy/complications/physiopathology
Child
Constipation/etiology
Data Collection
Englund E
European Journal of Paediatric Neurology
Extremities/blood supply/physiology
Female
Health Status
Humans
Journal Article
Male
Malker H
Muscle Tonus/physiology
Pain/etiology
Parents
Preschool
Q3 Scoping Review Results
Questionnaires
Sleep Disorders/etiology
Stener-Victorin E
Svedberg LE
-
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.jpainsymman.2007.09.008" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2007.09.008</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 palliative care improve quality? A survey of bereaved family members
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2008
Subject
The topic of the resource
Female; Humans; Male; Terminal Care; Family; Adult; Data Collection; Aged; Middle Aged; Treatment Outcome; New York; adolescent; 80 and over; bereavement; Palliative Care/statistics & numerical data; Patient Satisfaction/statistics & numerical data; Health Care; Quality Assurance; Pain/epidemiology/nursing
Creator
An entity primarily responsible for making the resource
Gelfman LP; Meier DE; Morrison RS
Description
An account of the resource
Palliative care is the interdisciplinary specialty that aims to relieve suffering and improve the quality of care for patients with serious illness and their families. Although palliative care programs are becoming increasingly prevalent in U.S. hospitals, the impact of hospital palliative care consultation programs on the quality of care received by family members is not well understood. We conducted prospective quantitative telephonic interviews of family members of patients who died at Mount Sinai Medical Center between April and December 2005 using the validated "After-Death Bereaved Family Member Interview," to assess quality of medical care at the end of life. Multivariable techniques were used to compare family satisfaction of palliative care patients vs. usual care patients controlling for age, race (white vs. nonwhite), diagnosis (cancer vs. noncancer), socioeconomic status (Medicaid vs. non-Medicaid), and functional status (number of dependent activities of daily living). One hundred ninety eligible subjects were contacted and successful interviews were completed with 149 (78.4%) family members (54 palliative care and 95 usual care patients). Palliative care showed benefit, with 65% of palliative care patients' family members reporting that their emotional or spiritual needs were met, as compared to 35% of usual care patients' family members (P=0.004). Sixty-seven percent of palliative care patients' family members reported confidence in one or more self-efficacy domains, as compared to 44% of usual care patients' family members (P=0.03). Our study shows that palliative care consultation is associated with improved satisfaction, with attention to family and enhanced self-efficacy. Palliative care offers a unique approach by integrating the needs of the family into the care of the patient.
2008
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2007.09.008" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2007.09.008</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
80 And Over
Adolescent
Adult
Aged
Backlog
Bereavement
Data Collection
Family
Female
Gelfman LP
Health Care
Humans
Journal Article
Journal of Pain and Symptom Management
Male
Meier DE
Middle Aged
Morrison RS
New York
Pain/epidemiology/nursing
Palliative Care/statistics & Numerical Data
Patient Satisfaction/statistics & Numerical Data
Quality Assurance
Terminal Care
Treatment Outcome
-
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.jpeds.2007.05.022" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpeds.2007.05.022</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
Toward family-centered inpatient medical care: The role of parents as participants in medical decisions.
Publisher
An entity responsible for making the resource available
The Journal Of Pediatrics
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; Female; Hospitalization; Humans; Male; Adult; Data Collection; Logistic Models; Middle Aged; Self Efficacy; Longitudinal Studies; Multivariate Analysis; Consumer Participation; Family Nursing; adolescent; decision making; Parents/psychology
Creator
An entity primarily responsible for making the resource
Tarini BA; Christakis DA; Lozano P
Description
An account of the resource
OBJECTIVES: To determine parental participation in medical decision-making (MDM) during hospitalization and its association with parental self-efficacy and to explore other factors associated with participation. STUDY DESIGN: We surveyed parents of children admitted to a pediatric medical unit to measure parental report of participation in MDM during hospitalization and self-efficacy with physician interactions (categorized into tertiles). We performed multivariate logistic regression to evaluate the association between self-efficacy and parental participation, controlling for potential confounders. RESULTS: One hundred thirty of 278 eligible parents completed surveys and 86% reported participating in MDM about their child's care. After adjusting for covariates, parents with scores in the middle and highest self-efficacy tertiles had higher odds of participating in MDM compared with parents in the lowest tertile. Younger parents and parents of previously hospitalized children were also more likely to participate although parents with a high school education or less were less likely. CONCLUSIONS: Self-efficacy was significantly associated with parental participation in MDM during hospitalization after adjusting for confounding factors. Interventions to increase self-efficacy may also improve parental participation in MDM.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpeds.2007.05.022" target="_blank" rel="noreferrer">10.1016/j.jpeds.2007.05.022</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
Adult
Backlog
Child
Christakis DA
Consumer Participation
Data Collection
Decision Making
Family Nursing
Female
Hospitalization
Humans
Journal Article
Logistic Models
Longitudinal Studies
Lozano P
Male
Middle Aged
Multivariate Analysis
Parents/psychology
Self Efficacy
Tarini BA
The Journal Of Pediatrics
-
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/10.1089/jpm.2009.0074" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2009.0074</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
Are we training our fellows adequately in delivering bad news to patients? A survey of hematology/oncology program directors
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2009
Subject
The topic of the resource
Humans; United States; Physician-Patient Relations; Data Collection; Attitude of Health Personnel; Education; Communication; Truth Disclosure; Fellowships and Scholarships; Medical; Medical Oncology/education; Graduate/economics/standards; Hematology/education
Creator
An entity primarily responsible for making the resource
Hebert HD; Butera JN; Castillo J; Mega AE
Description
An account of the resource
BACKGROUND: Medical oncologists often must deliver bad news. The authors were interested in the extent of formal training in delivering bad news in hematology/oncology fellowships in the United States. METHODS: An e-mail survey was sent to all hematology/oncology fellowship program directors in the United States. Surveys were e-mailed to 124 program directors and responses were received either via e-mail or regular mail. Program directors were asked the adequacy, the perceived necessity, the quality of this training, and the institutional support provided. It was also intended to elicit responses about the degree of formal training fellows receive in delivering bad news. chi(2) Statistics were used to perform comparisons between items; p values of less than 0.05 were considered statistically significant. RESULTS: Sixty-five surveys were completed and returned (52% response rate). The majority of programs, 82%, are in urban areas and 97% of the primary teaching hospitals are considered tertiary care centers and 46% of programs carry a National Cancer Institute (NCI) designation. Median number of fellows in a training program is 6 with the range being 3 to 46. Eighty-nine percent of program directors reported that they themselves received little to no formal training in delivering bad news, but they report 37% of current fellows receive little to no formal training with 40% receiving some training and additional 23% receiving moderate to extensive training (p
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2009.0074" target="_blank" rel="noreferrer">10.1089/jpm.2009.0074</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
Attitude Of Health Personnel
Backlog
Butera JN
Castillo J
Communication
Data Collection
Education
Fellowships And Scholarships
Graduate/economics/standards
Hebert HD
Hematology/education
Humans
Journal Article
Journal of Palliative Medicine
Medical
Medical Oncology/education
Mega AE
Physician-patient Relations
Truth Disclosure
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/10.1097/01.pec.0000248701.87916.05" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.pec.0000248701.87916.05</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
Age limits and transition of health care in pediatric emergency medicine
Publisher
An entity responsible for making the resource available
Pediatric Emergency Care
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; Female; Humans; Male; United States; Pregnancy; Pediatrics; Adult; Data Collection; Age Factors; Cystic Fibrosis; Hospitals; Emergency Medicine; Organizational Policy; Emergency Service; adolescent; Adolescent Transitions; Pregnancy in Adolescence; Pediatric/statistics & numerical data; Hospital/statistics & numerical data; General/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Dobson JV; Bryce L; Glaeser PW; Losek JD
Description
An account of the resource
OBJECTIVE: To describe the practice reported by pediatric emergency department (PED) medical directors regarding age limits and transition of health care in their emergency departments and institutions. METHODS: A 28-question survey was sent by e-mail to 116 PED medical directors. Descriptive statistics were used to report results; chi tests were used for comparing categorical data. RESULTS: The survey was completed by 73 PED medical directors (63%). Age-limit policies were present in 58 (79%) of the PEDs, and 56 reported a specific age. The 18th and 21st birthdays were the most common specific ages cited. Thirty-six PEDs (64%) had an age limit of younger than 21 years. Pediatric emergency departments with age limits of 21 years or older versus younger than 21 years had a significantly higher rate of being associated with freestanding children's hospitals (P = 0.037). Appropriate exceptions to the age-limit policy included patients both over and under the age limit. The most common overage limit exception was cystic fibrosis, and the most common underage limit exception was teenage pregnancy. Thirteen PED medical directors (18%) were aware of a transition-of-care (pediatric to adult care provider) policy or work group at their institution, and 47 (64%) thought that such a work group would be valuable to addressing transition-of-care issues. CONCLUSION: In pediatric emergency medicine, the age of transition from pediatric to adult emergency care providers is variable both between and within institutions. Most PEDs have age limits of younger than 21 years. Most PED medical directors support a multidisciplinary work group or committee as a method of addressing transition of care. Known barriers to transition of care previously reported in the literature are reviewed.
2007
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.pec.0000248701.87916.05" target="_blank" rel="noreferrer">10.1097/01.pec.0000248701.87916.05</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 Transitions
Adult
Age Factors
Backlog
Bryce L
Child
Cystic Fibrosis
Data Collection
Dobson JV
Emergency Medicine
Emergency Service
Female
General/statistics & numerical data
Glaeser PW
Hospital/statistics & numerical data
Hospitals
Humans
Journal Article
Losek JD
Male
Organizational Policy
Pediatric Emergency Care
Pediatric/statistics & Numerical Data
Pediatrics
Pregnancy
Pregnancy in Adolescence
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/10.1503/cmaj.091881" target="_blank" rel="noreferrer">http://doi.org/10.1503/cmaj.091881</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 role of nurses in physician-assisted deaths in Belgium
Publisher
An entity responsible for making the resource available
Canadian Medical Association Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2010
Subject
The topic of the resource
Female; Humans; Male; Young Adult; Adult; Data Collection; Logistic Models; Questionnaires; Middle Aged; Euthanasia; Nurse's Role; Confidence Intervals; Odds Ratio; Suicide; Belgium; decision making; Active; home care services; Assisted/statistics & numerical data; Voluntary/statistics & numerical data; Active/statistics & numerical data; Terminal Care/methods/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Inghelbrecht E; Bilsen J; Mortier F; Deliens L
Description
An account of the resource
BACKGROUND: Belgium's law on euthanasia allows only physicians to perform the act. We investigated the involvement of nurses in the decision-making and in the preparation and administration of life-ending drugs with a patient's explicit request (euthanasia) or without an explicit request. We also examined factors associated with these deaths. METHODS: In 2007, we surveyed 1678 nurses who, in an earlier survey, had reported caring for one or more patients who received a potential life-ending decision within the year before the survey. Eligible nurses were surveyed about their most recent case. RESULTS: The response rate was 76%. Overall, 128 nurses reported having cared for a patient who received euthanasia and 120 for a patient who received life-ending drugs without his or her explicit request. Respectively, 64% (75/117) and 69% (81/118) of these nurses were involved in the physician's decision-making process. More often this entailed an exchange of information on the patient's condition or the patient's or relatives' wishes (45% [34/117] and 51% [41/118]) than sharing in the decision-making (24% [18/117] and 31% [25/118]). The life-ending drugs were administered by the nurse in 12% of the cases of euthanasia, as compared with 45% of the cases of assisted death without an explicit request. In both types of assisted death, the nurses acted on the physician's orders but mostly in the physician's absence. Factors significantly associated with a nurse administering the life-ending drugs included being a male nurse working in a hospital (odds ratio [OR] 40.07, 95% confidence interval [CI] 7.37-217.79) and the patient being over 80 years old (OR 5.57, 95% CI 1.98-15.70). INTERPRETATION: By administering the life-ending drugs in some of the cases of euthanasia, and in almost half of the cases without an explicit request from the patient, the nurses in our study operated beyond the legal margins of their profession.
2010
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1503/cmaj.091881" target="_blank" rel="noreferrer">10.1503/cmaj.091881</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
2010
Active
Active/statistics & numerical data
Adult
Assisted/statistics & numerical data
Backlog
Belgium
Bilsen J
Canadian Medical Association Journal
Confidence Intervals
Data Collection
Decision Making
Deliens L
Euthanasia
Female
home care services
Humans
Inghelbrecht E
Journal Article
Logistic Models
Male
Middle Aged
Mortier F
Nurse's Role
Odds Ratio
Questionnaires
Suicide
Terminal Care/methods/statistics & numerical data
Voluntary/statistics & numerical data
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/10.1001/jama.293.3.340" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.293.3.340</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
Adolescents' reports of parental knowledge of adolescents' use of sexual health services and their reactions to mandated parental notification for prescription contraception
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Data Collection; Parents; Logistic Models; Questionnaires; Practice; adolescent; Empirical Approach; Attitudes; Adolescent Transitions; Health Knowledge; Genetics and Reproduction; Confidentiality/legislation & jurisprudence/psychology; Contraception Behavior; Family Planning Services/legislation & jurisprudence/utilization; Parental Notification/legislation & jurisprudence; Sexual Behavior; Unsafe Sex
Creator
An entity primarily responsible for making the resource
Jones RK; Purcell A; Singh S; Finer LB
Description
An account of the resource
CONTEXT: Legislation has been proposed that would mandate parental notification for adolescents younger than 18 years (minors) obtaining prescription contraception from federally funded family planning clinics. OBJECTIVE: To determine the extent to which parents are currently aware that their teenage daughters are accessing reproductive health services and how minors would react in the face of mandated parental involvement laws for prescription birth control. DESIGN, SETTING, AND PARTICIPANTS: A total of 1526 female adolescents younger than 18 years seeking reproductive health services at a national sample of 79 family planning clinics were surveyed between May 2003 and February 2004. MAIN OUTCOME MEASURES: Proportions of minor females who reported that a parent or guardian was aware that they were at the family planning clinic and, under conditions of mandated parental involvement, proportions of minors who would access prescription contraceptives at family planning clinics or engage in unsafe sex. RESULTS: Sixty percent of minors reported that a parent or guardian knew they were accessing sexual health services at the clinic. Fifty-nine percent of all adolescents would use the clinic for prescription contraception even if parental notification were mandated. This response was less common (29.5%) among adolescents whose parents were unaware of their clinic visits and more common (79%) among those whose parents were aware. Many adolescents gave more than 1 response to mandated parental involvement. Forty-six percent would use an over-the-counter method, and 18% would go to a private physician. Seven percent said that they would stop having sex as one response, but only 1% indicated this would be their only reaction. One in 5 adolescents would use no contraception or rely on withdrawal as one response to mandated notification. CONCLUSIONS: Most minor adolescent females seeking family planning services report that their parents are aware of their use of services. Most would continue to use clinic services if parental notification were mandated. However, mandated parental notification laws would likely increase risky or unsafe sexual behavior and, in turn, the incidence of adolescent pregnancy and sexually transmitted diseases.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.293.3.340" target="_blank" rel="noreferrer">10.1001/jama.293.3.340</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
Adolescent Transitions
Attitudes
Backlog
Confidentiality/legislation & jurisprudence/psychology
Contraception Behavior
Data Collection
Empirical Approach
Family Planning Services/legislation & jurisprudence/utilization
Female
Finer LB
Genetics and Reproduction
Health Knowledge
Humans
JAMA
Jones RK
Journal Article
Logistic Models
Parental Notification/legislation & jurisprudence
Parents
Practice
Purcell A
Questionnaires
Sexual Behavior
Singh S
Unsafe Sex
-
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.apnr.2005.04.003" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.apnr.2005.04.003</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
Recruitment and retention in a longitudinal palliative care study.
Publisher
An entity responsible for making the resource available
Applied Nursing 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
Female; Humans; Male; Palliative Care; Adult; Data Collection; Middle Aged; Focus Groups; Longitudinal Studies; Patient Selection; Feasibility Studies; patient care team; caregivers; Neoplasms/therapy; Acquired Immunodeficiency Syndrome/therapy; Clinical Nursing Research/organization & administration; Patient Dropouts
Creator
An entity primarily responsible for making the resource
Sherman DW; McSherry CB; Parkas V; et al
Description
An account of the resource
A longitudinal feasibility study regarding quality of life and interventions for patients with advanced cancer or AIDS and their family caregivers was conducted to determine issues related to their recruitment and retention and to obtain pilot data relevant to the development of a larger study. At the completion of the study, a focus group consisting of the members of the palliative care research team was convened to identify barriers to and facilitators of the research process based on their research experience. The purpose of this article is to (1) describe recruitment, mortality rates, attrition rates, and compliance with data collection of patients and family caregivers experiencing an advanced illness and to (2) examine the researchers' perspectives regarding barriers to and facilitators of the research process that relate to patients and family caregivers, institutions, the data collection process, and their personal experiences. Implications for palliative care research are discussed.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.apnr.2005.04.003" target="_blank" rel="noreferrer">10.1016/j.apnr.2005.04.003</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
Acquired Immunodeficiency Syndrome/therapy
Adult
Applied Nursing Research
Backlog
Caregivers
Clinical Nursing Research/organization & administration
Data Collection
et al
Feasibility Studies
Female
Focus Groups
Humans
Journal Article
Longitudinal Studies
Male
McSherry CB
Middle Aged
Neoplasms/therapy
Palliative Care
Parkas V
Patient Care Team
Patient Dropouts
Patient Selection
Sherman DW
-
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.jacc.2005.05.062" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jacc.2005.05.062</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
Variations in adult congenital heart disease training in adult and pediatric cardiology fellowship programs
Publisher
An entity responsible for making the resource available
Journal Of The American College Of Cardiology
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; Adult; Data Collection; Education; Program Evaluation; Fellowships and Scholarships; Medical; Models; Adolescent Transitions; Educational; Pediatrics/education; Heart Defects; Congenital; Cardiology/education; Graduate/economics/standards
Creator
An entity primarily responsible for making the resource
Gurvitz MZ; Chang RK; Ramos FJ; Allada V; Child JS; Klitzner TS
Description
An account of the resource
OBJECTIVES: The purpose of this study was to evaluate adult congenital heart disease (CHD) training among U.S. cardiology fellowship programs. BACKGROUND: Although training recommendations for caring for adults with CHD exist, the educational patterns and numbers of specialists remain unknown. METHODS: We surveyed U.S. directors of 170 adult cardiology and 45 pediatric cardiology (PC) fellowship programs. Adult program surveys contained 1 single-response and 10 multiple-choice questions; pediatric program surveys contained 1 single-response and 13 multiple-choice questions. RESULTS: Ninety-four adult cardiology fellowship directors (55%) and 34 PC directors (76%) responded. Of adult programs, 70% were in university hospitals and 40% were associated with PC groups. Those with PC-affiliation had more adult CHD clinics (p < 0.02) and more adult CHD inpatient (p < 0.02) and outpatient (p < 0.002) visits than those without PC affiliation. Most PC programs were in children's hospitals (38%) or children's hospitals within adult hospitals (50%). Eighty-two percent had associated adult cardiology programs. Pediatric programs followed adult CHD patients in various care settings. Over one-third of adult and pediatric programs had < or = 3 lectures annually regarding adult CHD. Nine adult and 2 pediatric programs offered adult CHD fellowships, and only 31 adult and 11 pediatric fellows pursued advanced CHD training in the last 10 years. CONCLUSIONS: Adult CHD didactic and clinical experiences for cardiology fellows vary widely. Few programs offer advanced CHD training, and the number of specially trained physicians is unlikely to meet projected workforce requirements. Adult cardiology programs with PC affiliation have increased CHD experience and might provide good educational models.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jacc.2005.05.062" target="_blank" rel="noreferrer">10.1016/j.jacc.2005.05.062</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 Transitions
Adult
Allada V
Backlog
Cardiology/education
Chang RK
Child
Child JS
Congenital
Data Collection
Education
Educational
Fellowships And Scholarships
Graduate/economics/standards
Gurvitz MZ
Heart Defects
Humans
Journal Article
Journal of the American College of Cardiology
Klitzner TS
Medical
Models
Pediatrics/education
Program Evaluation
Ramos FJ
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/10.1016/j.jpainsymman.2004.05.004" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2004.05.004</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
A name given to the resource
Status quo of palliative care in pediatric oncology-a nationwide survey in Germany
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
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; Data Collection; Treatment Outcome; adolescent; Preschool; Non-U.S. Gov't; Research Support; infant; Physician's Practice Patterns/statistics & numerical data; Pediatrics/methods/trends; Newborn; location of death; Germany/epidemiology; Home Care Services/statistics & numerical data/trends; Medical Oncology/methods/trends; Neoplasms/mortality/therapy; Palliative Care/methods/statistics & numerical data/trends
Creator
An entity primarily responsible for making the resource
Friedrichsdorf SJ; Menke A; Brun S; Wamsler C; Zernikow B
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2004.05.004" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.05.004</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
Cancer is the leading cause of death among the pediatric population with life-limiting conditions. The provision of palliative care at home and on the children's cancer unit has not been surveyed previously on a national scale. A survey of 71 (of 73) German pediatric oncology units (response rate 97%) provided information on the timing of breaking bad news, place of death, orchestrating palliative care at home and on the ward, integration of services and staff, funding of palliative care, bereavement services for siblings and parents, educational needs, level of self-satisfaction, and designated integrated palliative care services for children with cancer. More than 60% of children with malignancies died as inpatients in 2000, fewer than 40% at home. Twenty-nine pediatric cancer departments were able to provide comprehensive medical palliative home care, and nine units incorporate a designated palliative care team or person. Only half of the departments provide bereavement services for siblings. Many health professionals working on pediatric cancer units in Germany provide palliative home care in their free time without any payment. They predominantly use their private vehicles and often are unclear about the legal background and insurance arrangements covering their provision of care. The data suggest an important need for education about palliative and end-of-life care. The majority of children dying from cancer in Germany do not have access to comprehensive palliative care services at home. Our study highlights the necessity of incorporating the palliative paradigm into the care of children with cancer. Barriers to its implementation must be identified and overcome.
2005
Adolescent
Backlog
Brun S
Child
Data Collection
Female
Friedrichsdorf SJ
Germany/epidemiology
Home Care Services/statistics & numerical data/trends
Humans
Infant
Journal Article
Journal of Pain and Symptom Management
Location Of Death
Male
Medical Oncology/methods/trends
Menke A
Neoplasms/mortality/therapy
Newborn
Non-U.S. Gov't
Palliative Care/methods/statistics & numerical data/trends
Pediatrics/methods/trends
Physician's Practice Patterns/statistics & numerical data
Preschool
Research Support
Treatment Outcome
Wamsler C
Zernikow B
-
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.jpainsymman.2004.05.007" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2004.05.007</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
HIV/AIDS symptom management in Southern Africa
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
PedPal Lit; statistics & numerical data Research Support; 80 and over; Anti-HIV Agents/therapeutic use; Child; Comorbidity; Complementary Therapies/methods/statistics & numerical data; Data Collection; Diet; Therapy/statistics & numerical data; Female; Humans; Male; Middle Aged; Palliative Care/; Acquired Immunodeficiency Syndrome/diagnosis/epidemiology/therapy Adolescent Adult Africa; methods; Non-U.S. Gov't Self Care/methods/statistics & numerical data; Southern/epidemiology Aged Aged
Creator
An entity primarily responsible for making the resource
Sukati NA; Mndebele SC; Makoa ET; Ramukumba TS; Makoae LN; Seboni NM; Human S; Holzemer WL
Description
An account of the resource
We describe self-reported strategies used by persons living with HIV/AIDS in Botswana, Lesotho, South Africa, and Swaziland to manage common HIV-related symptoms. A questionnaire asked participants to list three to six symptoms they had recently experienced, the care strategies they had used to make them better, where they had learned the strategy, and to rate the perceived effectiveness of the strategy. Data were collected in 2002 from 743 persons. The self-care management strategies were coded into eight categories: medications, complementary treatments, self-comforting, changing diet, seeking help, exercise, spiritual care, and daily thoughts/activities. Overall, participants reported medications as the most frequently occurring management strategy and the most effective. A very small inventory of behavioral strategies was available to participants to help them manage their HIV-related symptoms.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2004.05.007" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.05.007</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
80 And Over
Acquired Immunodeficiency Syndrome/diagnosis/epidemiology/therapy Adolescent Adult Africa
Anti-HIV Agents/therapeutic use
Backlog
Child
Comorbidity
Complementary Therapies/methods/statistics & numerical data
Data Collection
Diet
Female
Holzemer WL
Human S
Humans
Journal Article
Journal of Pain and Symptom Management
Makoa ET
Makoae LN
Male
Methods
Middle Aged
Mndebele SC
Non-U.S. Gov't Self Care/methods/statistics & numerical data
Palliative Care/
PedPal Lit
Ramukumba TS
Seboni NM
Southern/epidemiology Aged Aged
statistics & numerical data Research Support
Sukati NA
Therapy/statistics & numerical data
-
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/10.1089/jpm.2006.9.1128" target="_blank" rel="noreferrer">http://doi.org/10.1089/jpm.2006.9.1128</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
Perceptions of the term palliative care
Publisher
An entity responsible for making the resource available
Journal Of Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Female; Humans; Male; United States; Palliative Care; Adult; Data Collection; Parents; Health Personnel; Attitude; Hospitals; Wisconsin; Pediatric
Creator
An entity primarily responsible for making the resource
Boldt MA; Yusuf F; Himelstein BP
Description
An account of the resource
OBJECTIVES: To assess parents' and health care providers' perceptions of the name and description of a pediatric palliative care (PPC) program. METHODS: Survey conducted at three pediatric health care sites; asked respondents (parents and staff) about their likelihood to use a program identified either as palliative care or supportive care, as well as their understanding and feelings about the program before and after reading a program description. RESULTS: Response rate was 89% (195/220); 184 were considered evaluable. Parent respondents in the supportive care group scored significantly higher (Mann-Whitney test, p = 0.003) on "likelihood to use program" (mean score, 4.22, n = 60) than those in the palliative care group (mean score, 3.58, n = 45) before each read the program description. However, this group difference disappeared (p = 0.582) after reading the description (mean scores 4.50, 4.38, respectively; n = 48, n = 40, respectively). The name palliative care evoked more negative emotions compared to the supportive care name in parents, and reading the program description led to more positive feelings. In staff, reading the program description significantly increased likelihood to use the program for those in the Palliative Care group only (4.22 to 4.44; p < 0.05; n = 41). Staff also had more positive feelings about the program called supportive care, and rated this name best most frequently. CONCLUSION: Better definition of and explanation to families and health care providers about what palliative care programs offer may improve perceptions about palliative care and increase program utilization.
2006
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1089/jpm.2006.9.1128" target="_blank" rel="noreferrer">10.1089/jpm.2006.9.1128</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
Adult
Attitude
Backlog
Boldt MA
Data Collection
Female
Health Personnel
Himelstein BP
Hospitals
Humans
Journal Article
Journal of Palliative Medicine
Male
Palliative Care
Parents
Pediatric
United States
Wisconsin
Yusuf F
-
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/eurheartj/ehi396" target="_blank" rel="noreferrer">http://doi.org/10.1093/eurheartj/ehi396</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 spectrum of adult congenital heart disease in Europe: morbidity and mortality in a 5 year follow-up period. The Euro Heart Survey on adult congenital heart disease
Publisher
An entity responsible for making the resource available
European Heart Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Female; Humans; Male; Pregnancy; Pregnancy Complications; Adult; Data Collection; Follow-Up Studies; Aged; Middle Aged; Survival Analysis; adolescent; Adolescent Transitions; Patient Acceptance of Health Care/statistics & numerical data; Heart Defects; Europe/epidemiology; Ambulatory Care/statistics & numerical data; Cardiovascular Agents/therapeutic use; Cardiovascular/mortality; Congenital/mortality
Creator
An entity primarily responsible for making the resource
Engelfriet P; Boersma E; Oechslin E; Tijssen J; Gatzoulis MA; Thilen U; Kaemmerer H; Moons P; Meijboom F; Popelova J; Laforest V; Hirsch R; Daliento L; Thaulow E; Mulder B
Description
An account of the resource
AIMS: To describe clinical and demographic characteristics at baseline of a European cohort of adults with congenital heart disease (CHD) and to assess mortality and morbidity in a 5 year follow-up period. METHODS AND RESULTS: Data collected as part of the Euro Heart Survey on adult CHD was analysed. This entailed information transcribed from the files of 4110 patients diagnosed with one of eight congenital heart conditions ('defects'), who consecutively visited the outpatient clinics of one of the participating centres in 1998. The patients were included retrospectively and followed until the end of 2003 for a median follow-up of 5.1 years. Notwithstanding their overall relatively good functional class and low mortality over the follow-up period, a considerable proportion of the patients had a history of endocarditis, arrhythmias, or vascular events. There were major differences between the eight defects, both in morbidity and regarding specific characteristics. Outcomes were worst in cyanotic defects and in the Fontan circulation, but a considerable proportion of the other patients also suffer from cardiac symptoms. In particular, arrhythmias are common. CONCLUSION: The spectrum of adult CHD in Europe emerging from this survey is one of a predominantly young population with substantial morbidity but relatively low mortality in a 5 year period.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/eurheartj/ehi396" target="_blank" rel="noreferrer">10.1093/eurheartj/ehi396</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
Adolescent Transitions
Adult
Aged
Ambulatory Care/statistics & numerical data
Backlog
Boersma E
Cardiovascular Agents/therapeutic use
Cardiovascular/mortality
Congenital/mortality
Daliento L
Data Collection
Engelfriet P
Europe/epidemiology
European Heart Journal
Female
Follow-up Studies
Gatzoulis MA
Heart Defects
Hirsch R
Humans
Journal Article
Kaemmerer H
Laforest V
Male
Meijboom F
Middle Aged
Moons P
Mulder B
Oechslin E
Patient Acceptance Of Health Care/statistics & Numerical Data
Popelova J
Pregnancy
Pregnancy Complications
Survival Analysis
Thaulow E
Thilen U
Tijssen J
-
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.2004-0905" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2004-0905</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
New and lingering controversies in pediatric end-of-life care
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; Analgesics; Data Collection; Attitude of Health Personnel; Medical Futility; Medical Staff; Withholding Treatment; Life Support Care; Medical; Practice Guidelines; ICU Decision Making; Pain/drug therapy; Opioid/therapeutic use; Specialties; Terminal Care/psychology; Nurses/psychology; Hospital/psychology
Creator
An entity primarily responsible for making the resource
Solomon MZ; Sellers DE; Heller KS; Dokken DL; Levetown M; Rushton C; Truog RD; Fleischman AR
Description
An account of the resource
OBJECTIVES: Professional societies, ethics institutes, and the courts have recommended principles to guide the care of children with life-threatening conditions; however, little is known about the degree to which pediatric care providers are aware of or in agreement with these guidelines. The study's objectives were to determine the extent to which physicians and nurses in critical care, hematology/oncology, and other subspecialties are in agreement with one another and with widely published ethical recommendations regarding the withholding and withdrawing of life support, the provision of adequate analgesia, and the role of parents in end-of-life decision-making. METHODS: Three children's hospitals and 4 general hospitals with PICUs in eastern, southwestern, and southern parts of the United States were surveyed. This population-based sample was composed of attending physicians, house officers, and nurses who cared for children (age: 1 month to 18 years) with life-threatening conditions in PICUs or in medical, surgical, or hematology/oncology units, floors, or departments. Main outcome measures included concerns of conscience, knowledge and beliefs, awareness of published guidelines, and agreement or disagreement with guidelines. RESULTS: A total of 781 clinicians were sampled, including 209 attending physicians, 116 house officers, and 456 nurses. The overall response rate was 64%. Fifty-four percent of house officers and substantial proportions of attending physicians and nurses reported, "At times, I have acted against my conscience in providing treatment to children in my care." For example, 38% of critical care attending physicians and 25% of hematology/oncology attending physicians expressed these concerns, whereas 48% of critical care nurses and 38% of hematology/oncology nurses did so. Across specialties, approximately 20 times as many nurses, 15 times as many house officers, and 10 times as many attending physicians agreed with the statement, "Sometimes I feel we are saving children who should not be saved," as agreed with the statement, "Sometimes I feel we give up on children too soon." However, hematology/oncology attending physicians (31%) were less likely than critical care (56%) and other subspecialty (66%) attending physicians to report, "Sometimes I feel the treatments I offer children are overly burdensome." Many respondents held views that diverged widely from published recommendations. Despite a lack of awareness of key guidelines, across subspecialties the vast majority of attending physicians (range: 92-98%, depending on specialty) and nurses (range: 83-85%) rated themselves as somewhat to very knowledgeable regarding ethical issues. CONCLUSIONS: There is a need for more hospital-based ethics education and more interdisciplinary and cross-subspecialty discussion of inherently complex and stressful pediatric end-of-life cases. Education should focus on establishing appropriate goals of care, as well as on pain management, medically supplied nutrition and hydration, and the appropriate use of paralytic agents. More research is needed on clinicians' regard for the dead-donor rule.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2004-0905" target="_blank" rel="noreferrer">10.1542/peds.2004-0905</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
Analgesics
Attitude Of Health Personnel
Backlog
Child
Data Collection
Dokken DL
Fleischman AR
Heller KS
Hospital/psychology
Humans
ICU Decision Making
Journal Article
Levetown M
Life Support Care
Medical
Medical Futility
Medical Staff
Nurses/psychology
Opioid/therapeutic use
Pain/drug Therapy
Pediatrics
Practice Guidelines
Rushton C
Sellers DE
Solomon MZ
Specialties
Terminal Care/psychology
Truog RD
Withholding Treatment
-
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.jpainsymman.2004.01.013" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.jpainsymman.2004.01.013</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
Frequency and perceived competence in providing palliative care to terminally ill patients: a survey of primary care physicians
Publisher
An entity responsible for making the resource available
Journal Of Pain And Symptom Management
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; Physician-Patient Relations; Data Collection; Physician's Practice Patterns/statistics & numerical data; United States/epidemiology; Palliative Care/statistics & numerical data; Terminally Ill/statistics & numerical data; Quality Assurance; Professional Competence/statistics & numerical data; Health Care/methods; Primary Health Care/statistics & numerical data; Terminal Care/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Farber NJ; Urban SY; Collier VU; Metzger M; Weiner J; Boyer EG
Description
An account of the resource
We surveyed primary care physicians about their involvement and perceived skills in palliative care. A survey instrument asked how frequently internal medicine and family practice physicians performed 10 palliative care items. Subjects rated their skills in each area. A majority of physicians always or frequently performed all 10 palliative care items, but fewer than 50% of respondents adequately attended to the spiritual needs and economic problems of patients. Interest in palliative care was associated with an increased frequency in performing palliative care items (P = 0.036), while training in palliative care was associated with better perceived performance (P = 0.05). Only 36% of respondents had received training in palliative care. Internists and family practitioners provide palliative care to patients, but feel their skills are lacking in certain areas. Training may improve care to patients at the end of life.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.jpainsymman.2004.01.013" target="_blank" rel="noreferrer">10.1016/j.jpainsymman.2004.01.013</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
2004
Backlog
Boyer EG
Collier VU
Data Collection
Farber NJ
Health Care/methods
Humans
Journal Article
Journal of Pain and Symptom Management
Metzger M
Palliative Care/statistics & Numerical Data
Physician-patient Relations
Physician's Practice Patterns/statistics & numerical data
Primary Health Care/statistics & numerical data
Professional Competence/statistics & numerical data
Quality Assurance
Terminal Care/statistics & Numerical Data
Terminally Ill/statistics & numerical data
United States/epidemiology
Urban SY
Weiner J
-
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(04)16939-0" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(04)16939-0</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 population-based nationwide study of parents' perceptions of a questionnaire on their child's death due to cancer.
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
2004
Subject
The topic of the resource
Child; Female; Humans; Male; Data Collection; Questionnaires; Attitude to Death; Pilot Projects; Attitude; Longitudinal Studies; Sweden; Research; Ethics; Empirical Approach; bereavement; Death and Euthanasia; Interviews; Parents/psychology; Biomedical and Behavioral Research
Creator
An entity primarily responsible for making the resource
Kreicbergs U; Valdimarsdottir U; Steineck G; Henter JI
Description
An account of the resource
A proposed nationwide postal questionnaire to Swedish parents who had lost a child due to cancer between 1992 and 1997 was denied approval by the local ethics committee. However, a pilot study to assess the harm and benefit of the questionnaire was approved. 95% of parents found the pilot study valuable; thus, we were allowed to proceed with the main study, which consisted of 129 questions about the child's care and death and five about the parents' perceptions of the study. 423 (99%) parents found the investigation valuable, 285 (68%) were positively affected, and 123 (28%) were negatively affected (10 [2%] of whom, very much). Although the numerical data cannot be directly translated to ethical conclusions, they can provide guidance for future ethical decisions.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(04)16939-0" target="_blank" rel="noreferrer">10.1016/S0140-6736(04)16939-0</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
Attitude
Attitude To Death
Backlog
Bereavement
Biomedical and Behavioral Research
Child
Data Collection
Death and Euthanasia
Empirical Approach
Ethics
Female
Henter JI
Humans
Interviews
Journal Article
Kreicbergs U
Lancet
Longitudinal Studies
Male
Parents/psychology
Pilot Projects
Questionnaires
Research
Steineck G
Sweden
Valdimarsdottir U
-
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(04)16950-X" target="_blank" rel="noreferrer">http://doi.org/10.1016/S0140-6736(04)16950-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
Asking parents unaskable questions
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
2004
Subject
The topic of the resource
Child; Humans; Data Collection; Interviews as Topic; Questionnaires; Attitude to Death; Sweden; Research; Ethics; bereavement; Death and Euthanasia; Parents/psychology; Biomedical and Behavioral Research
Creator
An entity primarily responsible for making the resource
Burnell RH; O'Keefe M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/S0140-6736(04)16950-X" target="_blank" rel="noreferrer">10.1016/S0140-6736(04)16950-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
Description
An account of the resource
2004
2004
Attitude To Death
Backlog
Bereavement
Biomedical and Behavioral Research
Burnell RH
Child
Data Collection
Death and Euthanasia
Ethics
Humans
Interviews As Topic
Journal Article
Lancet
O'Keefe M
Parents/psychology
Questionnaires
Research
Sweden
-
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/10.1034/j.1399-0004.2002.620512.x" target="_blank" rel="noreferrer">http://doi.org/10.1034/j.1399-0004.2002.620512.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
Sleep disturbance in mucopolysaccharidosis type III (Sanfilippo syndrome): a survey of managing clinicians.
Publisher
An entity responsible for making the resource available
Clinical Genetics
Date
A point or period of time associated with an event in the lifecycle of the resource
2002
Subject
The topic of the resource
Humans; Data Collection; Physicians; Behavior Therapy; Mucopolysaccharidosis III/complications; Sleep Disorders/complications; Sleep Disorders/drug therapy; Sleep Disorders/therapy
Creator
An entity primarily responsible for making the resource
Fraser J; Wraith JE; Delatycki MB
Description
An account of the resource
Sanfilippo syndrome (mucopolysaccharidosis type III) is the commonest mucoploysaccharidosis. It causes neurodegeneration with often profound sleep and behavioral disturbance. Management of the sleep disturbance is difficult and inconsistent. In this study, we surveyed clinicians with particular expertise in the management of individuals with mucopolysaccharidoses. We found that sleep problems are almost universal in this patient population and that no one treatment is consistently viewed as beneficial. Among the clinicians surveyed, melatonin is reported as the medication most likely to be of benefit. Benzodiazepines, chloral hydrate, antihistamines and antipsychotic agents are overall reported as less efficacious. The major side-effect of the medications as a group was reported to be daytime somnolence. Based on this study, recommendations are given regarding the approach to sleep disturbance in Sanfilippo syndrome.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1034/j.1399-0004.2002.620512.x" target="_blank" rel="noreferrer">10.1034/j.1399-0004.2002.620512.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
Behavior Therapy
Clinical Genetics
Data Collection
Delatycki MB
Fraser J
Humans
Journal Article
Mucopolysaccharidosis III/complications
Physicians
Sleep Disorders/complications
Sleep Disorders/drug therapy
Sleep Disorders/therapy
Wraith 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://doi.org/10.1046/j.1365-2702.2002.00611.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1365-2702.2002.00611.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
Mothers' experience of social support following the death of a child
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
2002
Subject
The topic of the resource
Child; Female; Humans; Male; Grief; Adult; Data Collection; Interpersonal Relations; Mother-Child Relations; Questionnaires; Attitude to Death; Nurse's Role; Finland; Preschool; Adaptation; Psychological; Mothers/psychology; social support
Creator
An entity primarily responsible for making the resource
Laakso H; Paunonen-Ilmonen M
Description
An account of the resource
1. This study aimed at analysing the grief and coping of mothers whose child had died under the age of 7 years. The paper describes the social support received as experienced by mothers. 2. Data were collected using a survey (n=91) and interviews (n=50) with mothers who had lost their child at least 1 year previously. The questionnaire contained questions concerning background characteristics, the Hogan Grief Reaction Checklist and open-ended questions. Survey data were analysed using a two-way analysis of variance, Wilcoxon test, cross-tabulation and content analysis. Interview data were analysed using inductive content analysis. 3. Findings showed that the spouse, children, grandparents, next of kin, friends and colleagues were the main sources of support. 4. Support consisted of emotional support, informational and instrumental support, and consolation and caring. Informational support consisted of advice and guidance from the mother's own mother or fellow sufferers. Instrumental support consisted of assistance with practical issues. Negative support manifested itself in unwarranted interference by relatives in the family's affairs or breaking up of friendships. 5. Mothers expected professional practitioners to provide honest information about the dying child's illness and practical arrangements after the child's death, and to keep up hope as long as the child was alive. 6. The care facility was also expected to maintain contact with the family after the child's death.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1365-2702.2002.00611.x" target="_blank" rel="noreferrer">10.1046/j.1365-2702.2002.00611.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
Adaptation
Adult
Attitude To Death
Backlog
Child
Data Collection
Female
Finland
Grief
Humans
Interpersonal Relations
Journal Article
Journal of Clinical Nursing
Laakso H
Male
Mother-child Relations
Mothers/psychology
Nurse's Role
Paunonen-Ilmonen M
Preschool
Psychological
Questionnaires
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/10.1097/01.ccm.0000084805.15352.01" target="_blank" rel="noreferrer">http://doi.org/10.1097/01.ccm.0000084805.15352.01</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
A name given to the resource
Attitudes and preferences of intensivists regarding the role of family interests in medical decision making for incompetent patients
Publisher
An entity responsible for making the resource available
Critical Care Medicine
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; Cross-Sectional Studies; Female; Humans; infant; Male; United States; Mental Competency; Adult; Data Collection; Attitude of Health Personnel; Middle Aged; Professional-Family Relations; Euthanasia; Religion and Medicine; Legal Guardians; Morals; Intensive Care; Hospitals; Ethics; Teaching; Medical; decision making; Newborn; ICU Decision Making; Passive
Creator
An entity primarily responsible for making the resource
Hardart GE; Truog RD
Description
An account of the resource
OBJECTIVE: The role of family interests in medical decision making is controversial. Physicians who routinely treat incompetent patients may have preferred strategies for addressing family interests as they are encountered in surrogate medical decision making. We sought to determine how physicians view the role of family interests in surrogate medical decision making. DESIGN: Cross-sectional mail survey. SETTING: Remote study.PATIENTS: Surveyed were neonatologists, pediatric intensivists, and medical intensivists affiliated with American medical schools. MEASUREMENTS AND MAIN RESULTS: A total of 327 (55%) of 596 surveys were returned; 35% of respondents were pediatric intensivists, 39% were neonatologists, and 26% were medical intensivists. The majority of respondents believed that family interests should be considered in decisions for incompetent patients, even if those interests are not necessarily important interests of the patient. Less than 10% preferred the traditional model in which the physician-patient relationship is exclusive and family interests are excluded. Medical intensivists, and those who described themselves as more religious, more opposed to healthcare rationing, and more protective of patients, tended to prefer patient-centered surrogate decision-making models. Physicians who treat children, especially neonatologists, were more accepting of family-centered surrogate decision-making models than were physicians who exclusively treat adults. CONCLUSIONS: A majority of the academic intensivists in our study believed that family interests should play an important role in medical decision making for incompetent patients. Our findings suggest that the traditional view of the physician-patient relationship may represent an overly simplistic model for medical decision making.
2003
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/01.ccm.0000084805.15352.01" target="_blank" rel="noreferrer">10.1097/01.ccm.0000084805.15352.01</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
Adult
Attitude Of Health Personnel
Backlog
Child
Critical Care Medicine
Cross-sectional Studies
Data Collection
Decision Making
Ethics
Euthanasia
Female
Hardart GE
Hospitals
Humans
ICU Decision Making
Infant
Intensive Care
Journal Article
Legal Guardians
Male
Medical
Mental Competency
Middle Aged
Morals
Newborn
Passive
Professional-family Relations
Religion and Medicine
Teaching
Truog RD
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/10.1542/peds.2003-0857-l" target="_blank" rel="noreferrer">http://doi.org/10.1542/peds.2003-0857-l</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
Hospital staff and family perspectives regarding quality of pediatric palliative care.
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
2004
Subject
The topic of the resource
Child; Humans; Attitude to Health; Data Collection; Attitude of Health Personnel; Professional-Family Relations; Communication; Longitudinal Studies; Quality of Health Care; Non-U.S. Gov't; Research Support; bereavement; Family/psychology; Palliative Care/standards; Pain/therapy; Personnel; Hospital/psychology; Pediatrics/education/standards
Creator
An entity primarily responsible for making the resource
Contro N; Larson J; Scofield S; Sourkes B; Cohen HJ
Description
An account of the resource
BACKGROUND: Development of a pediatric palliative care program was preceded by a needs assessment that included a staff survey and family interviews regarding improving pediatric palliative care. METHODS: Four hundred forty-six staff members and community physicians responded to a written survey regarding comfort and expertise in delivering end of life care. Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up contact. Frequencies were generated for responses to the staff survey. Five interviewers reviewed the families' narratives and identified frequently occurring themes. RESULTS: Staff members reported feeling inexperienced in communicating with patients and families about end of life issues, transition to palliative care, and do not resuscitate status. Families reported distress caused by uncaring delivery of bad news and careless remarks made by staff members. Staff members reported feeling inexperienced in symptom and pain management and described occasions when pain could have been better managed. Families believed pain had been managed as well as possible despite observing their children suffer. Fifty-four percent of staff members reported that adequate support was not provided for those who treat dying children. Staff members and family members stated their desire for more support. Staff members who described their most difficult experiences caring for a dying child referenced personal pain and inadequate support most frequently. CONCLUSIONS: Albeit from different perspectives, staff members and family members shared common concerns and experiences regarding pediatric palliative care. These experiences emphasize the need for additional systematic study, improved education and support for staff members, and continued development of more effective and compassionate delivery of pediatric palliative care.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1542/peds.2003-0857-l" target="_blank" rel="noreferrer">10.1542/peds.2003-0857-l</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
Attitude Of Health Personnel
Attitude To Health
Backlog
Bereavement
Child
Cohen HJ
Communication
Contro N
Data Collection
Family/psychology
Hospital/psychology
Humans
Journal Article
Larson J
Longitudinal Studies
Non-U.S. Gov't
Pain/therapy
Palliative Care/standards
Pediatrics
Pediatrics/education/standards
Personnel
Professional-family Relations
Quality Of Health Care
Research Support
Scofield S
Sourkes B
-
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/10.5737/1181912x143183186" target="_blank" rel="noreferrer">http://doi.org/10.5737/1181912x143183186</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
Mapping the journey of cancer patients through health care system. Part 1: developing the research question
Publisher
An entity responsible for making the resource available
Canadian Oncology Nursing Journal
Date
A point or period of time associated with an event in the lifecycle of the resource
2004
Subject
The topic of the resource
Humans; Attitude to Health; Data Collection; Research Design; Longitudinal Studies; Motivation; Philosophy; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Nursing; Delivery of Health Care/standards; Manitoba; Neoplasms/diagnosis/psychology/therapy; Nursing Methodology Research/methods
Creator
An entity primarily responsible for making the resource
Sloan JA; Scott-Findlay S; Nemecek A; Blood P; Trylinski C; Whittaker H; El Sayed S; Clinch J; Khoo K
Description
An account of the resource
This is the first in a series of articles relating results from research which constructed a complete history of interactions with the health care system from available data sources for all patients diagnosed in 1990 with primary breast, colorectal, or lung tumours in Manitoba from one year prior to diagnosis through to two years post-diagnosis. This article presents the motivation and genesis for this line of research. The study evolved from the question of "What happens to a person who is diagnosed with cancer?" into a major research endeavour encompassing a broad spectrum of philosophic and clinical research questions. A large interdisciplinary team collaborated on developing operational methods to combine existing data sources into unified cancer patient histories.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.5737/1181912x143183186" target="_blank" rel="noreferrer">10.5737/1181912x143183186</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
Attitude To Health
Backlog
Blood P
Canadian Oncology Nursing Journal
Clinch J
Data Collection
Delivery of Health Care/standards
El Sayed S
Humans
Journal Article
Khoo K
Longitudinal Studies
Manitoba
Motivation
Nemecek A
Neoplasms/diagnosis/psychology/therapy
Non-U.S. Gov't
Nursing
Nursing Methodology Research/methods
Philosophy
Psychological
Research Design
Research Support
Scott-Findlay S
Sloan JA
Trylinski C
Whittaker H
-
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/10.1001/archpedi.154.2.173" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpedi.154.2.173</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
Preventive services in a health maintenance organization: how well do pediatricians screen and educate adolescent patients?
Publisher
An entity responsible for making the resource available
Archives Of Pediatrics & Adolescent Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Humans; Data Collection; California; Adolescent Behavior; adolescent; Adolescent Transitions; Risk-Taking; Adolescent Health Services/statistics & numerical data; Health Maintenance Organizations; Patient Education as Topic/statistics & numerical data; Pediatrics/statistics & numerical data; Physician's Practice Patterns/statistics & numerical data; Preventive Health Services/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Halpern-Felsher BL; Ozer EM; Millstein SG; Wibbelsman CJ; Fuster CD; Elster AB; Irwin CE
Description
An account of the resource
OBJECTIVE: To determine whether pediatricians in managed care settings adhere to national guidelines concerning the provision of clinical preventive services. DESIGN: Surveys were mailed between September 1996 and April 1997 to all pediatricians practicing in a California group-model health maintenance organization. The survey asked pediatricians about their screening and education practices on 34 recommended services and the actions taken with adolescent patients who have engaged in risk behavior. RESULTS: The response rate was 66.2% (N = 366). Pediatricians, on average, screened 92% of their adolescent patients for immunization status and blood pressure; 85% for school performance; 60% to 80% for obesity, sexual intercourse, cigarette use, alcohol use, drug use, and seat belt and helmet use; 30% to 47% for access to handguns, suicide, eating disorders, depression, and driving after drinking alcohol; fewer than 20% for use of smokeless tobacco, sexual orientation, sexual and physical abuse, and riding a bike or swimming after drinking alcohol; and 26% to 41% for close friends' engagement in risk behavior. Pediatricians' assessment and education with adolescent patients who screened positive for risk behavior was particularly low. Female physicians, physicians who saw a greater proportion of older adolescents, and recent medical school graduates were more likely to provide preventive services. CONCLUSIONS: Pediatricians in this health maintenance organization provide preventive services to adolescent patients at rates below recommendations but at rates greater than physicians in other practice settings. Improvement is especially needed in the areas that contribute most to adolescent mortality and for patients who screen positive for a risk behavior.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpedi.154.2.173" target="_blank" rel="noreferrer">10.1001/archpedi.154.2.173</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
2000
Adolescent
Adolescent Behavior
Adolescent Health Services/statistics & numerical data
Adolescent Transitions
Archives Of Pediatrics & Adolescent Medicine
Backlog
California
Data Collection
Elster AB
Fuster CD
Halpern-Felsher BL
Health Maintenance Organizations
Humans
Irwin CE
Journal Article
Millstein SG
Ozer EM
Patient Education as Topic/statistics & numerical data
Pediatrics/statistics & numerical data
Physician's Practice Patterns/statistics & numerical data
Preventive Health Services/statistics & numerical data
Risk-Taking
Wibbelsman CJ
-
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/10.1002/1098-240x(200008)23:4%3C334::aid-nur9%3E3.0.co" target="_blank" rel="noreferrer">http://doi.org/10.1002/1098-240x(200008)23:4%3C334::aid-nur9%3E3.0.co</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
Whatever happened to qualitative description?
Publisher
An entity responsible for making the resource available
Research In Nursing & Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Humans; Data Collection; Research Design; Statistical; Data Interpretation; Nursing Research/methods
Creator
An entity primarily responsible for making the resource
Sandelowski M
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/1098-240x(200008)23:4%3C334::aid-nur9%3E3.0.co" target="_blank" rel="noreferrer">10.1002/1098-240x(200008)23:4%3C334::aid-nur9%3E3.0.co</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 general view of descriptive research as a lower level form of inquiry has influenced some researchers conducting qualitative research to claim methods they are really not using and not to claim the method they are using: namely, qualitative description. Qualitative descriptive studies have as their goal a comprehensive summary of events in the everyday terms of those events. Researchers conducting qualitative descriptive studies stay close to their data and to the surface of words and events. Qualitative descriptive designs typically are an eclectic but reasonable combination of sampling, and data collection, analysis, and re-presentation techniques. Qualitative descriptive study is the method of choice when straight descriptions of phenomena are desired.
2000
Backlog
Data Collection
Data Interpretation
Humans
Journal Article
Nursing Research/methods
Research Design
Research In Nursing & Health
Sandelowski M
statistical
-
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/10.1056/NEJM200002243420805" target="_blank" rel="noreferrer">http://doi.org/10.1056/NEJM200002243420805</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
Clinical problems with the performance of euthanasia and physician-assisted suicide in The Netherlands
Publisher
An entity responsible for making the resource available
The New England Journal Of Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Female; Humans; Male; Adult; Data Collection; Aged; Middle Aged; Euthanasia; Netherlands; Suicide; 80 and over; Empirical Approach; Death and Euthanasia; Active; Random Allocation; Euthanasia/statistics & numerical data; Empirical Research; Assisted/statistics & numerical data
Creator
An entity primarily responsible for making the resource
Groenewoud JH; van der Heide A; Onwuteaka-Philipsen BD; Willems DL; van der Maas PJ; van der Wal G
Description
An account of the resource
BACKGROUND AND METHODS: The characteristics and frequency of clinical problems with the performance of euthanasia and physician-assisted suicide are uncertain. We analyzed data from two studies of euthanasia and physician-assisted suicide in The Netherlands (one conducted in 1990 and 1991 and the other in 1995 and 1996), with a total of 649 cases. We categorized clinical problems as technical problems, such as difficulty inserting an intravenous line; complications, such as myoclonus or vomiting; or problems with completion, such as a longer-than-expected interval between the administration of medications and death. RESULTS: In 114 cases, the physician's intention was to provide assistance with suicide, and in 535, the intention was to perform euthanasia. Problems of any type were more frequent in cases of assisted suicide than in cases of euthanasia. Complications occurred in 7 percent of cases of assisted suicide, and problems with completion (a longer-than-expected time to death, failure to induce coma, or induction of coma followed by awakening of the patient) occurred in 16 percent of the cases; complications and problems with completion occurred in 3 percent and 6 percent of cases of euthanasia, respectively. The physician decided to administer a lethal medication in 21 of the cases of assisted suicide (18 percent), which thus became cases of euthanasia. The reasons for this decision included problems with completion (in 12 cases) and the inability of the patient to take all the medications (in 5). CONCLUSIONS: There may be clinical problems with the performance of euthanasia and physician-assisted suicide. In The Netherlands, physicians who intend to provide assistance with suicide sometimes end up administering a lethal medication themselves because of the patient's inability to take the medication or because of problems with the completion of physician-assisted suicide.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1056/NEJM200002243420805" target="_blank" rel="noreferrer">10.1056/NEJM200002243420805</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
2000
80 And Over
Active
Adult
Aged
Assisted/statistics & numerical data
Backlog
Data Collection
Death and Euthanasia
Empirical Approach
Empirical Research
Euthanasia
Euthanasia/statistics & numerical data
Female
Groenewoud JH
Humans
Journal Article
Male
Middle Aged
Netherlands
Onwuteaka-Philipsen BD
Random Allocation
Suicide
The New England Journal Of Medicine
van der Heide A
van der Maas PJ
van der Wal G
Willems DL
-
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/10.1080/088800100276479" target="_blank" rel="noreferrer">http://doi.org/10.1080/088800100276479</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
Adaptational process of parents of pediatric oncology patients
Publisher
An entity responsible for making the resource available
Pediatric Hematology And Oncology
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Child; Female; Humans; Male; Adult; Data Collection; Aged; Middle Aged; Family Relations; Religion; Family Health; adolescent; Preschool; Non-U.S. Gov't; Research Support; Adaptation; Psychological; Caregivers/psychology; infant; Parents/psychology; Psychological; Stress; social support; Neoplasms/psychology; Taiwan/ethnology
Creator
An entity primarily responsible for making the resource
Yeh CH; Lee TT; Chen ML; Li W
Description
An account of the resource
This study, based on grounded theory, explores the adaptational process of parents of pediatric oncology patients. Thirty-two Taiwanese parents (26 mothers and 6 fathers) were interviewed. Data were collected through individual in-depth and focus group interviews, observations, medical chart review, nurses' note, and researchers' reflexive journals. The findings suggest that parents adapt to their children's cancer by a dynamic process; i.e., they modify their coping tasks and related strategies as clinical events (e.g., diagnosis, side effects, relapses, or death) occur. This adaptational process consisted of five components: confronting treatment, maintaining family integrity, establishing support, maintaining emotional well-being, and searching for spiritual meaning. Related factors such as coping tasks are described.
2000
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/088800100276479" target="_blank" rel="noreferrer">10.1080/088800100276479</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
2000
Adaptation
Adolescent
Adult
Aged
Backlog
Caregivers/psychology
Chen ML
Child
Data Collection
Family Health
Family Relations
Female
Humans
Infant
Journal Article
Lee TT
Li W
Male
Middle Aged
Neoplasms/psychology
Non-U.S. Gov't
Parents/psychology
Pediatric Hematology And Oncology
Preschool
Psychological
Religion
Research Support
Social Support
Stress
Taiwan/ethnology
Yeh CH
-
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/10.1097/00006199-199703000-00010" target="_blank" rel="noreferrer">http://doi.org/10.1097/00006199-199703000-00010</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 Delphi method?
Publisher
An entity responsible for making the resource available
Nursing Research
Date
A point or period of time associated with an event in the lifecycle of the resource
1997
Subject
The topic of the resource
Humans; decision making; Data Collection; Research Design; Organizational Objectives; Reproducibility of Results; Delphi Technique; Organizational Policy; Non-U.S. Gov't; Research Support; Organizational; Nursing Research/methods/organization & administration
Creator
An entity primarily responsible for making the resource
Crisp J; Pelletier D; Duffield C; Adams A; Nagy S
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00006199-199703000-00010" target="_blank" rel="noreferrer">10.1097/00006199-199703000-00010</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
1997
1997
Adams A
Backlog
Crisp J
Data Collection
Decision Making
Delphi Technique
Duffield C
Humans
Journal Article
Nagy S
Non-U.S. Gov't
Nursing Research
Nursing Research/methods/organization & administration
Organizational
Organizational Objectives
Organizational Policy
Pelletier D
Reproducibility of Results
Research Design
Research 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/10.1136/adc.73.1.77" target="_blank" rel="noreferrer">http://doi.org/10.1136/adc.73.1.77</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
Behaviour in mucopolysaccharide disorders
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
1995
Subject
The topic of the resource
Child; Female; Humans; Male; Prevalence; Data Collection; Parents; Family Health; Self-Help Groups; Preschool; Q3 Literature Search; Mucopolysaccharidoses/complications; Mucopolysaccharidosis III/psychology; Aggression; Child Behavior Disorders/complications; Mucopolysaccharidosis II/psychology; Sleep Disorders/complications
Creator
An entity primarily responsible for making the resource
Bax MC; Colville GA
Description
An account of the resource
This paper reports a study of the nature and prevalence of behaviour problems in 258 children with mucopolysaccharide disorders. Questionnaire data obtained through the post was supplemented by home visits to 42 families in the sample and by regular discussions with families at meetings of the Society for Mucopolysaccharide Diseases. High rates of behaviour problems were found, particularly in children with Sanfilippo's and Hunter's disease aged 5 to 9 years. These included destructiveness, restlessness, and aggressiveness. Sleep problems were common across subtypes with an overall prevalence of 66%. Parents reported that they received little or no support in the management of these difficult behaviours. It is concluded that behaviour problems are a primary feature of the mucopolysaccharide disorders and place a major strain on families. Services to help families cope with these problems are urgently needed.
1995
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/adc.73.1.77" target="_blank" rel="noreferrer">10.1136/adc.73.1.77</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
1995
Aggression
Archives of Disease in Childhood
Backlog
Bax MC
Child
Child Behavior Disorders/complications
Colville GA
Data Collection
Family Health
Female
Humans
Journal Article
Male
Mucopolysaccharidoses/complications
Mucopolysaccharidosis II/psychology
Mucopolysaccharidosis III/psychology
Parents
Preschool
Prevalence
Q3 Scoping Review Results
Self-Help Groups
Sleep Disorders/complications
-
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/10.1177/104990910101800503" target="_blank" rel="noreferrer">http://doi.org/10.1177/104990910101800503</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
Preparing for an initial JCAHO survey: one hospice's experience
Publisher
An entity responsible for making the resource available
American Journal Of Hospice & Palliative Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Data Collection; Hospices; Hospitals; Health Surveys; Special
Creator
An entity primarily responsible for making the resource
Groves LE
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/104990910101800503" target="_blank" rel="noreferrer">10.1177/104990910101800503</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
2001
2001
American Journal of Hospice & Palliative Medicine
Backlog
Data Collection
Groves LE
Health Surveys
Hospices
Hospitals
Journal Article
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/10.7326/0003-4819-128-6-199803150-00007" target="_blank" rel="noreferrer">http://doi.org/10.7326/0003-4819-128-6-199803150-00007</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
Building measurement and data collection into medical practice
Publisher
An entity responsible for making the resource available
Annals Of Internal Medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
1998
Subject
The topic of the resource
Humans; Data Collection; Physician's Role; Clinical Protocols; Outcome and Process Assessment (Health Care); patient care team; RDF Project; Diabetes Mellitus; Cost Control; Practice Management; Medical/standards; Blood Glucose Self-Monitoring; Type 2/therapy; Urinary Tract Infections/therapy
Creator
An entity primarily responsible for making the resource
Nelson EC; Splaine ME; Batalden PB; Plume SK
Description
An account of the resource
Clinicians can use data to improve daily clinical practice. This paper offers eight principles for using data to support improvement in busy clinical settings: 1) seek usefulness, not perfection, in the measurement; 2) use a balanced set of process, outcome, and cost measures; 3) keep measurement simple (think big, but start small); 4) use qualitative and quantitative data; 5) write down the operational definitions of measures; 6) measure small, representative samples; 7) build measurement into daily work; and 8) develop a measurement team. The following approaches to using data for improvement are recommended. First, begin with curiosity about outcomes or a need to improve results. Second, try to avoid knee-jerk, obstructive criticism of proposed measurements. Instead, propose solutions that are practical, goal-oriented, and good enough to start with. Third, gather baseline data on a small sample and check the findings. Fourth, try to change and improve the delivery process while gathering data. Fifth, plot results over time and analyze them by using a control chart or other graphical method. Sixth, refine your understanding of variation in processes and outcomes by dividing patients into clinically homogeneous subgroups (stratification) and analyzing the results separately for each subgroup. Finally, make further changes while measuring key outcomes over time. Measurement and improvement are intertwined; it is impossible to make improvements without measurement. Measuring and learning from each patient and using the information gleaned to test improvements can become part of daily medical practice in local settings.
1998
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7326/0003-4819-128-6-199803150-00007" target="_blank" rel="noreferrer">10.7326/0003-4819-128-6-199803150-00007</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
1998
Annals Of Internal Medicine
Backlog
Batalden PB
Blood Glucose Self-Monitoring
Clinical Protocols
Cost Control
Data Collection
Diabetes Mellitus
Humans
Journal Article
Medical/standards
Nelson EC
Outcome And Process Assessment (health Care)
Patient Care Team
Physician's Role
Plume SK
Practice Management
RDF Project
Splaine ME
Type 2/therapy
Urinary Tract Infections/therapy
-
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/10.1001/jama.284.19.2469" target="_blank" rel="noreferrer">http://doi.org/10.1001/jama.284.19.2469</a>
<a href="http://dx.doi.org/10.1001/jama.284.19.2469" target="_blank" rel="noreferrer">http://dx.doi.org/10.1001/jama.284.19.2469</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
Understanding of prognosis among parents of children who died of cancer: Impact on treatment goals and integration of palliative care
Publisher
An entity responsible for making the resource available
Jama
Date
A point or period of time associated with an event in the lifecycle of the resource
2000
Subject
The topic of the resource
Child; Female; Humans; Male; Palliative Care; Terminally Ill; Adult; Data Collection; Prognosis; Attitude to Death; Regression Analysis; Empirical Approach; Professional Patient Relationship; Death and Euthanasia; decision making; Parents/psychology; Oncology at EOL; Physicians/psychology; Neoplasms/mortality/therapy
Creator
An entity primarily responsible for making the resource
Wolfe J; Klar N; Grier HE; et al
Description
An account of the resource
Context Parents' understanding of prognosis or decision making about palliative care for children who die of cancer is largely unknown. However, a more accurate understanding of prognosis could alter treatment goals and expectations and lead to more effective care.Objectives To evaluate parental understanding of prognosis in children who die of cancer and to assess the association of this factor with treatment goals and the palliative care received by children.Design, Setting, and Participants Survey, conducted between September 1997 and August 1998, of 103 parents of children who received treatment at the Dana-Farber Cancer Institute and Children's Hospital, Boston, Mass, and who died of cancer between 1990 and 1997 (72% of those eligible and those located) and 42 pediatric oncologists.Main Outcome Measure Timing of parental understanding that the child had no realistic chance for cure compared with the timing of physician understanding of this prognosis, as documented in the medical record.Results Parents first recognized that the child had no realistic chance for cure a mean (SD) of 106 (150) days before the child's death, while physician recognition occurred earlier at 206 (330) days before death. Among children who died of progressive disease, the group characterized by earlier recognition of this prognosis by both parents and physicians had earlier discussions of hospice care (odds ratio [OR], 1.03; 95% confidence interval [CI], 1.01-1.06; P = .01), better parental ratings of the quality of home care (OR, 3.31; 95% CI, 1.15-9.54; P = .03), earlier institution of a do-not-resuscitate order (OR, 1.03; 95% CI, 1.00-1.06; P = .02), less use of cancer-directed therapy during the last month of life (OR, 2.80; 95% CI, 1.05-7.50; P = .04), and higher likelihood that the goal of cancer-directed therapy identified by both physician and parent was to lessen suffering (OR, 5.17; 95% CI, 1.86-14.4; P = .002 for physician and OR, 6.56; 95% CI, 1.54-27.86; P = .01 for parents).Conclusion Considerable delay exists in parental recognition that children have no realistic chance for cure, but earlier recognition of this prognosis by both physicians and parents is associated with a stronger emphasis on treatment directed at lessening suffering and greater integration of palliative care.
2000-11
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/jama.284.19.2469" target="_blank" rel="noreferrer">10.1001/jama.284.19.2469</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
2000
Adult
Attitude To Death
Backlog
Child
Data Collection
Death and Euthanasia
Decision Making
Empirical Approach
et al
Female
Grier HE
Humans
JAMA
Journal Article
Klar N
Male
Neoplasms/mortality/therapy
Oncology at EOL
Palliative Care
Parents/psychology
Physicians/psychology
Professional Patient Relationship
Prognosis
Regression Analysis
Terminally Ill
Wolfe J
-
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=10136869" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=10136869</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
Audit of deaths in general practice: pilot study of the critical incident technique
Publisher
An entity responsible for making the resource available
Quality In Health Care
Date
A point or period of time associated with an event in the lifecycle of the resource
1992
Subject
The topic of the resource
England; Data Collection; Pilot Projects; Urban Population; Non-U.S. Gov't; Human; Support; Health Services Research/methods; Primary Health Care/standards; cause of death; Family Practice/standards; Medical Audit/methods
Creator
An entity primarily responsible for making the resource
Berlin A; Spencer JA; Bhopal RS; van Zwanenberg TD
Description
An account of the resource
OBJECTIVE--To develop and pilot a method for conducting an audit of deaths in general practice by the critical incident technique. DESIGN--Prospective use of the technique within a primary health care team, with the aid of a facilitator, to analyse the events surrounding patients' deaths. SETTING--One inner city academic general practice. PARTICIPANTS--Practice team, comprising general practitioners, trainee, practice manager, practice nurse, and attached health visitor and district nurses. MAIN MEASURES--Identification and classification of critical incidents associated with the case studies of eight recently decreased patients in the practice and subsequent impact on the practice. RESULTS--Among the eight case studies, 57 critical incidents were identified (mean 7.1 per case, range 2 to 15). A failure of communication was the most common factor identified in incidents giving rise to concern, but positive factors in patient care were also identified. Changes in practice included developing protocols for follow up of bereaved relatives and carers and a checklist to ensure completion of administrative follow up tasks resulting from the patient's death; cases of recent deaths and terminally ill patients were reviewed monthly. The practice team found the method acceptable and felt that the discussions had provided useful opportunities for reflecting on their role in patient care. CONCLUSIONS--The critical incident technique fulfils the needs of an audit of deaths in general practice; however, further evaluation based on more cases from different practices is now required.
1992
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
1992
Backlog
Berlin A
Bhopal RS
Cause Of Death
Data Collection
England
Family Practice/standards
Health Services Research/methods
Human
Journal Article
Medical Audit/methods
Non-U.S. Gov't
Pilot Projects
Primary Health Care/standards
Quality In Health Care
Spencer JA
Support
Urban Population
van Zwanenberg TD
-
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=9743839" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=9743839</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
Issues in research: Formative evaluation and its relevance to palliative 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
1998
Subject
The topic of the resource
England; Data Collection; Quality of Health Care; Health Care; Quality Indicators; Palliative Care/standards; Program Evaluation
Creator
An entity primarily responsible for making the resource
Ingleton C; Field D; Clark D
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
1998
1998
Backlog
Clark D
Data Collection
England
Field D
Health Care
Ingleton C
Journal Article
Palliative Care/standards
Palliative Medicine
Program Evaluation
Quality Indicators
Quality Of Health Care
-
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.
URL Address
<a href="https://doi.org/10.1136/bmjspcare-2011-000058" target="_blank" rel="noreferrer">https://doi.org/10.1136/bmjspcare-2011-000058</a>
Notes
<p>2045-4368<br />Straatman, Lynn<br />Miller, Tanice<br />Journal Article<br />Research Support, Non-U.S. Gov't<br />England<br />BMJ Support Palliat Care. 2013 Sep;3(3):366-71. doi: 10.1136/bmjspcare-2011-000058. Epub 2012 Jun 1.</p>
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/.
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Title
A name given to the resource
Paediatric Palliative Care: A Survey Of Paediatricians And Family Practitioners
Publisher
An entity responsible for making the resource available
Bmj Supportive & Palliative Care
Subject
The topic of the resource
Adaptation Psychological; Adult; Aged; British Columbia; Curriculum; Data Collection; Education Medical Continuing; Female; Humans; Male; Middle Aged; Palliative Care/ Psychology; Pediatrics/ Education; Physicians Family/ Education/ Psychology; Self Care/psychology; Surveys And Questionnaires
Creator
An entity primarily responsible for making the resource
Straatman L; Miller T
Description
An account of the resource
BACKGROUND: Paediatric palliative care focuses on the enhancement of the quality of life for a child and family through a combination of active and compassionate therapies intended to comfort and support the child and family who are living with a life-threatening illness. The purpose of this study was to assess the experience with and confidence in providing paediatric palliative care of practicing family/general practitioners (GPs) and paediatricians. In addition, the learning needs, modes of learning and their methods of coping/self-care were questioned. METHODS: Two hundred paediatricians and GPs in the province of British Columbia were randomly selected to participate in a mailed survey. The survey consisted of three categories: demographic information, experience and knowledge of paediatric palliative care, educational needs and preferences for learning and provision of their own self-care. RESULTS: The response rate of completed surveys was 56.5%. Only 40.1% of respondents felt their knowledge and experience were adequate. Overall, 73.5% of the respondents reported that they would like to learn more about paediatric palliative care. Over 53% of those surveyed preferred that learning be offered remotely through either internet or correspondence. Seventy-four per cent of respondents expressed they had adequate or very adequate self-care strategies to meet their own needs of well-being. CONCLUSIONS: The results of the survey will guide the paediatric palliative care community to design programmes that will better educate practicing physicians and future physicians about paediatric palliative and end of life care, healthcare services and family communication and support.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://doi.org/10.1136/bmjspcare-2011-000058" target="_blank" rel="noreferrer">10.1136/bmjspcare-2011-000058</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).
2013
Adaptation Psychological
Adult
Aged
BMJ Supportive & Palliative Care
British Columbia
Curriculum
Data Collection
Education Medical Continuing
Female
Humans
Male
Middle Aged
Miller T
Paediatric Palliative Care: A Survey Of Paediatricians And Family Practitioners
Palliative Care/ Psychology
Pediatrics/ Education
Physicians Family/ Education/ Psychology
Self Care/psychology
Straatman L
Surveys And Questionnaires