1
40
19
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Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
February 2024 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
February List 2024
URL Address
<a href="http://doi.org/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/archdischild-2023-325810</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Importance of parental involvement in paediatric palliative care in Hong Kong: Qualitative case study
Publisher
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Archives of Disease in Childhood
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; diagnosis; article; female; human; male; social support; palliative therapy; Internet; interview; medical information; physician; health care personnel; therapy; caregiver; semi structured interview; case study; nurse; child health; Hong Kong
Creator
An entity primarily responsible for making the resource
Wong FKY; Ho JMC; Lai TC; Lee LPY; Ho EKY; Lee SWY; Chan SCW; Fung CW; Ho ACH; Li CH; Li CK; Chiu ATG; Tsui KW; Lam KKW
Description
An account of the resource
Objective: To compare and contrast the perceived care needs of children with life-limiting conditions (CLLC) from the perspectives of the children, parents and healthcare providers. Design: A qualitative case study method using semistructured interviews was employed with a within-case and across-case analysis. Themes and subthemes emerging from the cases were compared and contrasted in the across-case analysis to explore the similarities and variations in participant perceptions. Setting/participants: The setting was the paediatric departments of five regional hospitals in Hong Kong. Twenty-five sets of informants (CLLC-parent-healthcare provider) were recruited, with 65 individual interviews conducted. Results: A total of 3784 units of analysis were identified, resulting in three themes with subthemes. 'Living with the disease' (55.8%) occupied the largest proportion, followed by 'information and understanding about the disease' (27.4%), and 'care support and palliative care' (16.8%). Healthcare provider support mainly focused on physical concerns. Family and social support were present, but carer stress created tension between couples. Doctors were the primary source of medical information, but the parents had to seek further information via the internet and support from patient groups. There was a perceived need for better coordination and collaboration of care. The palliative care approach coordinated by nurses was seen as helpful in addressing the care needs of the CLLC.
Identifier
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<a href="http://doi.org/10.1136/archdischild-2023-325810" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2023-325810</a>
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Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Archives of Disease in Childhood
Article
Caregiver
Case Study
Chan SCW
Child
Child Health
Chiu ATG
Diagnosis
February List 2024
Female
Fung CW
Health Care Personnel
Ho ACH
Ho EKY
Ho JMC
Hong Kong
Human
Internet
Interview
Lai TC
Lam KKW
Lee LPY
Lee SWY
Li CH
Li CK
Male
Medical Information
Nurse
Palliative Therapy
Physician
Semi Structured Interview
Social Support
Therapy
Tsui KW
Wong FKY
-
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
October 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
October List 2023
URL Address
<a href="http://doi.org/10.1055/a-2156-4833" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1055/a-2156-4833</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Internet Health Resources on Nocturnal Enuresis - A Readability, Quality and Accuracy Analysis
Publisher
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European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
The topic of the resource
child; article; controlled study; female; human; male; practice guideline; clinical article; Internet; Internet; Enuresis; questionnaire; nocturnal enuresis; government; health care planning; nephrologist; urologist; reading; continence; pediatric surgeon; search engine
Creator
An entity primarily responsible for making the resource
Fung ACH; Lee MHL; Leung L; Chan IHY; Kenneth W
Description
An account of the resource
Introduction Nocturnal enuresis is a common yet quality-of-life-limiting paediatric condition. There is an increasing trend for parents to obtain information on the disease's nature and treatment options via the internet. However, the quality of health-related information on the internet varies greatly and is largely uncontrolled and unregulated. With this study, a readability, quality and accuracy evaluation of the health information regarding nocturnal enuresis is carried out. Materials and Methods A questionnaire was administered to parents and patients with nocturnal enuresis to determine their use of the internet to research their condition. The most common search terms were determined, and the first 30 websites returned by the most popular search engines were used to assess the quality of information about nocturnal enuresis. Each site was categorised by type and assessed for readability using the Gunning-Fog score, SMOG index and Dale-Chall score; for quality using the DISCERN score; and for accuracy by comparison to the International Children's Continence Society (ICCS) guidelines by three experienced paediatric urologists and nephrologists. Results A total of 30 websites were assessed and classified into five categories: professional (n = 13), non-profit (n = 8), commercial (n = 4), government (n= 3) and other (n= 2). The information was considered difficult for the public to comprehend, with mean Gunning-Fog, SMOG index and Dale-Chall scores of 12.1+/-4.3, 14.1+/-4.3 and 8.1+/-1.3, respectively. The mean summed DISCERN score was 41+/-11.6 out of 75. Only seven (23%) websites were considered of good quality (DISCERN score > 50). The mean accuracy score of the websites was 3.2+/- 0.6 out of 5. Commercial websites were of the poorest quality and accuracy. Websites generally scored well in providing their aims and identifying treatment benefits and options, while they lacked references and information regarding treatment risks and mechanisms. Conclusions Online information about nocturnal enuresis exists for parents; however, most websites are of suboptimal quality, readability and accuracy. Paediatric surgeons should be aware of parents' health-information-seeking behaviour and be proactive in guiding parents to identify high-quality resources.Copyright Thieme. All rights reserved.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1055/a-2156-4833" target="_blank" rel="noreferrer noopener">10.1055/a-2156-4833</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Article
Chan IHY
Child
Clinical Article
continence
Controlled Study
enuresis
European journal of pediatric surgery : official journal of Austrian Association of Pediatric Surgery ... [et al] = Zeitschrift fur Kinderchirurgie
Female
Fung ACH
government
health care planning
Human
Internet
Kenneth W
Lee MHL
Leung L
Male
nephrologist
nocturnal enuresis
October List 2046
pediatric surgeon
Practice Guideline
Questionnaire
reading
search engine
urologist
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
April 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
April List 2023
URL Address
<a href="http://doi.org/10.1186/s13063-022-06363-0" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s13063-022-06363-0</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
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Living With Loss: Study Protocol for a Randomized Controlled Trial Evaluating an Internet-Based Perinatal Bereavement Program for Parents Following Stillbirth and Neonatal Death
Publisher
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Trials
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
The topic of the resource
Male; Female; Bereavement; Parents; Quality of Life; Grief; Infant Newborn; Australia; Pregnancy; Internet; Clinical Trials; Perinatal Death; Scales; Psychosocial Factors; Prevention and Control
Creator
An entity primarily responsible for making the resource
Loughnan SA; Boyle FM; Ellwood D; Crocker S; Lancaster A; Astell C; Dean J; Horey D; Callander E; Jackson C; Shand A; Flenady V
Description
An account of the resource
Background: Stillbirth and neonatal death are devastating pregnancy outcomes with long-lasting psychosocial consequences for parents and families, and wide-ranging economic impacts on health systems and society. It is essential that parents and families have access to appropriate support, yet services are often limited. Internet-based programs may provide another option of psychosocial support for parents following the death of a baby. We aim to evaluate the efficacy and acceptability of a self-guided internet-based perinatal bereavement support program "Living with Loss" (LWL) in reducing psychological distress and improving the wellbeing of parents following stillbirth or neonatal death.Methods: This trial is a two-arm parallel group randomized controlled trial comparing the intervention arm (LWL) with a care as usual control arm (CAU). We anticipate recruiting 150 women and men across Australia who have experienced a stillbirth or neonatal death in the past 2 years. Participants randomized to the LWL group will receive the six-module internet-based program over 8 weeks including automated email notifications and reminders. Baseline, post-intervention, and 3-month follow-up assessments will be conducted to assess primary and secondary outcomes for both arms. The primary outcome will be the change in Kessler Psychological Distress Scale (K10) scores from baseline to 3-month follow-up. Secondary outcomes include perinatal grief, anxiety, depression, quality of life, program satisfaction and acceptability, and cost-effectiveness. Analysis will use intention-to-treat linear mixed models to examine psychological distress symptom scores at 3-month follow-up. Subgroup analyses by severity of symptoms at baseline will be undertaken.Discussion: The LWL program aims to provide an evidence-based accessible and flexible support option for bereaved parents following stillbirth or neonatal death. This may be particularly useful for parents and healthcare professionals residing in rural regions where services and supports are limited. This RCT seeks to provide evidence of the efficacy, acceptability, and cost-effectiveness of the LWL program and contribute to our understanding of the role digital services may play in addressing the gap in the availability of specific bereavement support resources for parents following the death of a baby, particularly for men.Trial Registration: Australian New Zealand Clinical Trials Registry, ACTRN12621000631808 . Registered prospectively on 27 May 2021.
Identifier
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<a href="http://doi.org/10.1186/s13063-022-06363-0" target="_blank" rel="noreferrer noopener">10.1186/s13063-022-06363-0</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).
2022
April List 2023
Astell C
Australia
Bereavement
Boyle FM
Callander E
Clinical Trials
Crocker S
Dean J
Ellwood D
Female
Flenady V
Grief
Horey D
Infant Newborn
Internet
Jackson C
Lancaster A
Loughnan SA
Male
Parents
Perinatal Death
Pregnancy
Prevention and Control
Psychosocial Factors
Quality Of Life
scales
Shand A
Trials
-
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
November 2019 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
November 2019 List
URL Address
<a href="http://doi.org/10.7748/ncyp.2019.e1199" target="_blank" rel="noreferrer noopener">http://doi.org/10.7748/ncyp.2019.e1199</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Approaches to community-based palliative care provision by children's hospices in the UK
Publisher
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Nursing children and young people.
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
advance care planning; child health; palliative nursing; article; child; controlled study; female; human; human experiment; Internet; major clinical study; male; out-of-hours care; prescription; questionnaire; registered nurse; telephone; workforce
Creator
An entity primarily responsible for making the resource
Tatterton MJ
Description
An account of the resource
The number of children in the UK with life-limiting conditions and the demand for home-based palliative care is increasing. Children's hospices remain a dominant provider of palliative care. This study aimed to determine the approaches taken by children's hospices across the UK in meeting the planned and unplanned health needs of children and their families who receive palliative care at home. In addition, the survey aimed to identify the professional composition of community teams and the number of children and families supported by each service. An internet-based questionnaire survey was sent to all children's hospices in the UK, comprising ten questions exploring the size of the team, geographical areas covered, workforce composition, services offered and approaches to managing unplanned, out of hours care. Responses were received from 14 (26%) of the hospices. A total of 1,618 children and their families were being cared for by these hospices, of whom 825 received care at home. Registered nurses constituted the greatest proportion of staff and were employed by all teams. Care provided at home was broadly split into two categories: planned short breaks and responsive palliative nursing. The latter comprised advance care planning, anticipatory prescribing and active symptom control. Out of hours care was usually offered in the form of telephone support. Models of community-based care are evolving to include nurses practising at specialist and advanced levels, allowing more children with increasingly complex conditions to be cared for at home.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7748/ncyp.2019.e1199" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2019.e1199</a>
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2019
Advance Care Planning
Article
Child
Child Health
Controlled Study
Female
Human
Human Experiment
Internet
Major Clinical Study
Male
November 2019 List
Nursing children and young people.
out-of-hours care
palliative nursing
prescription
Questionnaire
registered nurse
Tatterton MJ
Telephone
workforce
-
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
November 2018 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
November 2018 List
URL Address
<a href="http://doi.org/10.1002/mgg3.353" target="_blank" rel="noreferrer noopener">http://doi.org/10.1002/mgg3.353</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Newborn genetic screening for spinal muscular atrophy in the UK: The views of the general population
Publisher
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Molecular genetics & genomic medicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
bloodspot;Ethics;Health Knowledge;newborn genetic screening;social implications;spinal muscular atrophy;Adolescent;Adult;Aged;Attitudes;Family;Female;Genetic Testing utilization;Humans;Infant;Internet;Male;Middle Aged;Muscular Atrophy;Neonatal Screening methods;Neuromuscular Diseases genetics;Newborn;Practice;Risk Assessment methods;Spinal diagnosis genetics;Surveys and Questionnaires;United Kingdom epidemiology
Creator
An entity primarily responsible for making the resource
Boardman FK;Sadler C;Young PJ
Description
An account of the resource
BACKGROUND: Spinal muscular atrophy (SMA) is an inherited neuromuscular disorder and a leading genetic cause of infant death worldwide. However, there is no routine screening program for SMA in the UK. Lack of treatments and the inability of screening tests to accurately predict disease severity are among the key reasons implementation of screening has faltered in the UK. With the recent release of the first therapy for SMA (Nusinersen), calls are being made for a reconsideration of this stance; however, very little is known about the views of the general public. METHODS: An online survey was administered to 232 individuals with no prior relationship with SMA to assess their attitudes toward a newborn screening program for it. Results are compared with previously gathered data on the views of SMA-affected families toward screening. RESULTS: Eighty-four percent of participants were in favor of newborn screening. Key reasons for support were a belief that it would lead to better healthcare and life expectancy for affected infants and facilitate informed decision-making for future pregnancies. Key reasons for nonsupport were a belief in the potential for significant negative impact on the family unit in terms of bonding and stress. CONCLUSIONS: Public acceptability is a key component in the evaluation of any potential screening program in the UK. This study demonstrates that newborn screening for SMA is viewed largely positively by people unfamiliar with the condition. The importance of early identification overrode all other social and ethical concerns about screening for the majority of participants.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1002/mgg3.353" target="_blank" rel="noreferrer noopener">10.1002/mgg3.353</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).
2018
Adolescent
Adult
Aged
Attitudes
bloodspot
Boardman FK
Ethics
Family
Female
Genetic Testing utilization
Health Knowledge
Humans
Infant
Internet
Male
Middle Aged
Molecular genetics & genomic medicine
Muscular Atrophy
Neonatal Screening methods
Neuromuscular Diseases genetics
Newborn
newborn genetic screening
November 2018 List
Practice
Risk Assessment methods
Sadler C
social implications
Spinal diagnosis genetics
Spinal Muscular Atrophy
Surveys And Questionnaires
United Kingdom epidemiology
Young PJ
-
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/NCC.0000000000000146" target="_blank" rel="noreferrer">http://doi.org/10.1097/NCC.0000000000000146</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
Facebook Advertisements Recruit Parents of Children With Cancer for an Online Survey of Web-Based Research Preferences
Publisher
An entity responsible for making the resource available
Cancer Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Child; Female; Male; Income; adolescent; Human; oncology; Diseases; Sample Size; Population; Article; Child; Caregiver; advertizing; cancer research; Caregiver; childhood cancer; Human; Internet; neoplasm; parent; social media; social network; cancer palliative therapy; cancer patient; cancer recurrence; click; computer; Facebook; health survey; information processing; interpersonal communication; legal guardian; major clinical study; mobile phone; nurse; Only Child; Palliative therapy; parent; parental attitude; participant recruitment; Patient; priority journal; school child; social media; Video Recording; Video Recording
Creator
An entity primarily responsible for making the resource
Akard TF; Wray S; Gilmer Mary Jo
Description
An account of the resource
BACKGROUND:: Studies involving samples of children with life-threatening illnesses and their families face significant challenges, including inadequate sample sizes and limited diversity. Social media recruitment and Web-based research methods may help address such challenges yet have not been explored in pediatric cancer populations. OBJECTIVE:: This study examined the feasibility of using Facebook advertisements to recruit parent caregivers of children and teenagers with cancer. We also explored the feasibility of Web-based video recording in pediatric palliative care populations by surveying parents of children with cancer regarding (a) their preferences for research methods and (b) technological capabilities of their computers and phones. METHODS:: Facebook's paid advertising program was used to recruit parent caregivers of children currently living with cancer to complete an electronic survey about research preferences and technological capabilities. RESULTS:: The advertising campaign generated 3 897 981 impressions, which resulted in 1050 clicks at a total cost of $1129.88. Of 284 screened individuals, 106 were eligible. Forty-five caregivers of children with cancer completed the entire electronic survey. Parents preferred and had technological capabilities for Web-based and electronic research methods. Participant survey responses are reported. CONCLUSION:: Facebook was a useful, cost-effective method to recruit a diverse sample of parent caregivers of children with cancer. Web-based video recording and data collection may be feasible and desirable in samples of children with cancer and their families. IMPLICATIONS FOR PRACTICE:: Web-based methods (eg, Facebook, Skype) may enhance communication and access between nurses and pediatric oncology patients and their families.
2014-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/NCC.0000000000000146" target="_blank" rel="noreferrer">10.1097/NCC.0000000000000146</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
2014
Adolescent
advertizing
Akard TF
Article
Backlog
Cancer Nursing
Cancer Palliative Therapy
Cancer Patient
Cancer Recurrence
Cancer Research
Caregiver
Child
Childhood Cancer
click
computer
Diseases
Facebook
Female
Gilmer Mary Jo
Health Survey
Human
Income
Information Processing
Internet
Interpersonal Communication
Journal Article
legal guardian
Major Clinical Study
Male
mobile phone
Neoplasm
Nurse
Oncology
Only Child
Palliative Therapy
Parent
Parental Attitude
participant recruitment
Patient
Population
Priority Journal
Sample Size
School Child
social media
social network
Video Recording
Wray S
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.2196/jmir.3018" target="_blank" rel="noreferrer">http://doi.org/10.2196/jmir.3018</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
Growing a professional network to over 3000 members in less than 4 years: evaluation of InspireNet, British Columbia's virtual nursing health services research network
Publisher
An entity responsible for making the resource available
Journal Of Medical Internet Research
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Subject
The topic of the resource
Humans; Education; Communication; Nurses; Health Services Research; British Columbia; Focus Groups; Computer Communication Networks; Nursing Research; Health Services; Research; Internet; Nursing; Blogging; social media; social networking; User-Computer Interface
Creator
An entity primarily responsible for making the resource
Frisch N; Atherton P; Borycki E; Mickelson G; Cordeiro J; Novak LH; Black A
Description
An account of the resource
BACKGROUND: Use of Web 2.0 and social media technologies has become a new area of research among health professionals. Much of this work has focused on the use of technologies for health self-management and the ways technologies support communication between care providers and consumers. This paper addresses a new use of technology in providing a platform for health professionals to support professional development, increase knowledge utilization, and promote formal/informal professional communication. Specifically, we report on factors necessary to attract and sustain health professionals' use of a network designed to increase nurses' interest in and use of health services research and to support knowledge utilization activities in British Columbia, Canada. OBJECTIVE: "InspireNet", a virtual professional network for health professionals, is a living laboratory permitting documentation of when and how professionals take up Web 2.0 and social media. Ongoing evaluation documents our experiences in establishing, operating, and evaluating this network. METHODS: Overall evaluation methods included (1) tracking website use, (2) conducting two member surveys, and (3) soliciting member feedback through focus groups and interviews with those who participated in electronic communities of practice (eCoPs) and other stakeholders. These data have been used to learn about the types of support that seem relevant to network growth. RESULTS: Network growth exceeded all expectations. Members engaged with varying aspects of the network's virtual technologies, such as teams of professionals sharing a common interest, research teams conducting their work, and instructional webinars open to network members. Members used wikis, blogs, and discussion groups to support professional work, as well as a members' database with contact information and areas of interest. The database is accessed approximately 10 times per day. InspireNet public blog posts are accessed roughly 500 times each. At the time of writing, 21 research teams conduct their work virtually using the InspireNet platform; 10 topic-based Action Teams meet to address issues of mutual concern. Nursing and other health professionals, even those who rated themselves as computer literate, required significant mentoring and support in their efforts to adopt their practice to a virtual environment. There was a steep learning curve for professionals to learn to work in a virtual environment and to benefit from the available technologies. CONCLUSIONS: Virtual professional networks can be positioned to make a significant contribution to ongoing professional practice and to creating environments supportive of information sharing, mentoring, and learning across geographical boundaries. Nonetheless, creation of a Web 2.0 and social media platform is not sufficient, in and of itself, to attract or sustain a vibrant community of professionals interested in improving their practice. Essential support includes instruction in the use of Web-based activities and time management, a biweekly e-Newsletter, regular communication from leaders, and an annual face-to-face conference.
2014
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2196/jmir.3018" target="_blank" rel="noreferrer">10.2196/jmir.3018</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
2014
Atherton P
Backlog
Black A
Blogging
Borycki E
British Columbia
Communication
Computer Communication Networks
Cordeiro J
Education
Focus Groups
Frisch N
Health Services
Health Services Research
Humans
Internet
Journal Article
Journal Of Medical Internet Research
Mickelson G
Novak LH
Nurses
Nursing
Nursing Research
Research
social media
social networking
User-Computer Interface
-
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/M14-0644" target="_blank" rel="noreferrer">http://doi.org/10.7326/M14-0644</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
Decision aids for advance care planning: an overview of the state of the science.
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
2014
Subject
The topic of the resource
Humans; Terminally Ill; Prognosis; Internet; advance care planning; Decision Support Techniques
Creator
An entity primarily responsible for making the resource
Butler M; Ratner E; McCreedy E; Shippee N; Kane RL
Description
An account of the resource
Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.
2014-09
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7326/M14-0644" target="_blank" rel="noreferrer">10.7326/M14-0644</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
2014
Advance Care Planning
Annals Of Internal Medicine
Backlog
Butler M
Decision Support Techniques
Humans
Internet
Journal Article
Kane RL
McCreedy E
Prognosis
Ratner E
Shippee N
Terminally Ill
-
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Backlog
URL Address
<a href="http://doi.org/10.1001/archpediatrics.2009.155" target="_blank" rel="noreferrer">http://doi.org/10.1001/archpediatrics.2009.155</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Neonatologist training to guide family decision making for critically ill infants
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
2009
Subject
The topic of the resource
Humans; infant; United States; Critical Illness; Attitude of Health Personnel; Education; Questionnaires; Professional-Family Relations; Communication; Clinical Competence; Linear Models; Fellowships and Scholarships; Internet; Medical; decision making; infant; Newborn; Premature; Neonatology/education; Graduate; Nonparametric; Statistics
Creator
An entity primarily responsible for making the resource
Boss RD; Hutton N; Donohue PK; Arnold RM
Description
An account of the resource
OBJECTIVES: To assess neonatology fellow training in guiding family decision making for high-risk newborns and in several critical communication skills for physicians in these scenarios. DESIGN: A Web-based national survey. SETTING: Neonatal-perinatal training programs in the United States. PARTICIPANTS: Graduating fellows in their final month of fellowship. MAIN OUTCOME MEASURES: Fellows' perceived training and preparedness to communicate with families about decision making. RESULTS: The response rate was 72%, representing 83% of accredited training programs. Fellows had a great deal of training in the medical management of extremely premature and dying infants. However, they reported much less training to communicate and make collaborative decisions with the families of these infants. More than 40% of fellows reported no communication training in the form of didactic sessions, role play, or simulated patient scenarios and no clinical communication skills training in the form of supervision and feedback of fellow-led family meetings. Fellows felt least trained to discuss palliative care, families' religious and spiritual needs, and managing conflicts of opinion between families and staff or among staff. Fellows perceived communication skills training to be of a higher priority to them than to faculty, and 93% of fellows feel that training in this area should be improved. CONCLUSIONS: Graduating neonatology fellows are highly trained in the technical skills necessary to care for critically ill and dying neonates but are inadequately trained in the communication skills that families identify as critically important when facing end-of-life decisions.
2009
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1001/archpediatrics.2009.155" target="_blank" rel="noreferrer">10.1001/archpediatrics.2009.155</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
Archives Of Pediatrics & Adolescent Medicine
Arnold RM
Attitude Of Health Personnel
Backlog
Boss RD
Clinical Competence
Communication
Critical Illness
Decision Making
Donohue PK
Education
Fellowships And Scholarships
Graduate
Humans
Hutton N
Infant
Internet
Journal Article
Linear Models
Medical
Neonatology/education
Newborn
Nonparametric
Premature
Professional-family Relations
Questionnaires
Statistics
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.cmpb.2004.05.006" target="_blank" rel="noreferrer">http://doi.org/10.1016/j.cmpb.2004.05.006</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
Metadata-driven Delphi rating on the Internet
Publisher
An entity responsible for making the resource available
Computer Methods And Programs In Biomedicine
Date
A point or period of time associated with an event in the lifecycle of the resource
2005
Subject
The topic of the resource
Delphi Technique; Internet; P.H.S.; Research Support; U.S. Gov't; Guidelines; Software
Creator
An entity primarily responsible for making the resource
Deshpande AM; Shiffman RN; Nadkarni PM
Description
An account of the resource
Paper-based data collection and analysis for consensus development is inefficient and error-prone. Computerized techniques that could improve efficiency, however, have been criticized as costly, inconvenient and difficult to use. We designed and implemented a metadata-driven Web-based Delphi rating and analysis tool, employing the flexible entity-attribute-value schema to create generic, reusable software. The software can be applied to various domains by altering the metadata; the programming code remains intact. This approach greatly reduces the marginal cost of re-using the software. We implemented our software to prepare for the Conference on Guidelines Standardization. Twenty-three invited experts completed the first round of the Delphi rating on the Web. For each participant, the software generated individualized reports that described the median rating and the disagreement index (calculated from the Interpercentile Range Adjusted for Symmetry) as defined by the RAND/UCLA Appropriateness Method. We evaluated the software with a satisfaction survey using a five-level Likert scale. The panelists felt that Web data entry was convenient (median 4, interquartile range [IQR] 4.0-5.0), acceptable (median 4.5, IQR 4.0-5.0) and easily accessible (median 5, IQR 4.0-5.0). We conclude that Web-based Delphi rating for consensus development is a convenient and acceptable alternative to the traditional paper-based method.
2005
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1016/j.cmpb.2004.05.006" target="_blank" rel="noreferrer">10.1016/j.cmpb.2004.05.006</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2005
Backlog
Computer Methods And Programs In Biomedicine
Delphi Technique
Deshpande AM
Guidelines
Internet
Journal Article
Nadkarni PM
P.H.S.
Research Support
Shiffman RN
Software
U.S. Gov't
-
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=16377241" target="_blank" rel="noreferrer">http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Citation&list_uids=16377241</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
Constipation in paediatric oncology
Publisher
An entity responsible for making the resource available
European Journal Of Oncology Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Child; Humans; Great Britain; Questionnaires; Health Services Needs and Demand; Nurse's Role; Evidence-Based Medicine; Nursing Evaluation Research; Internet; Dietary Fiber; PedPal Lit; Practice Guidelines; Cathartics/therapeutic use; Palliative Care/methods; Causality; Neoplasms/complications; Information Services; Child Nutrition/education; Constipation/diagnosis/etiology/prevention & control; Nursing Assessment/methods/standards; Oncologic Nursing/methods/standards; Pediatric Nursing/methods/standards
Creator
An entity primarily responsible for making the resource
Selwood K
Description
An account of the resource
Constipation is a common problem encountered by many children during treatment for childhood cancer. It can be distressing and impact on the quality of life for the child. However, the advice and information they and their families receive can vary enormously. The clinical practice group (a subgroup of the paediatric oncology nurses forum (PONF)) decided to examine the management of constipation throughout the paediatric oncology units in the UK. This paper presents the findings and the subsequent action taken and highlights the need for further work.
2006
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
Backlog
Cathartics/therapeutic use
Causality
Child
Child Nutrition/education
Constipation/diagnosis/etiology/prevention & control
Dietary Fiber
European Journal Of Oncology Nursing
Evidence-based Medicine
Great Britain
Health Services Needs And Demand
Humans
Information Services
Internet
Journal Article
Neoplasms/complications
Nurse's Role
Nursing Assessment/methods/standards
Nursing Evaluation Research
Oncologic Nursing/methods/standards
Palliative Care/methods
Pediatric Nursing/methods/standards
PedPal Lit
Practice Guidelines
Questionnaires
Selwood K
-
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/10.1038/sj.jp.7210687" target="_blank" rel="noreferrer">http://doi.org/10.1038/sj.jp.7210687</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
Creation of a neonatal end-of-life palliative care protocol
Publisher
An entity responsible for making the resource available
Journal Of Perinatology
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; infant; United States; Questionnaires; Professional-Family Relations; Euthanasia; Clinical Protocols; Delphi Technique; Counseling; Internet; Tissue and Organ Procurement; Non-U.S. Gov't; Research Support; Newborn; empathy; Palliative Care/standards; social support; Terminal Care/standards; Culture; Family/ethnology/psychology; Neonatology/standards; Passive/psychology; Ventilator Weaning
Creator
An entity primarily responsible for making the resource
Catlin A; Carter B
Description
An account of the resource
OBJECTIVE: To create a protocol delineating the needs of patients, families, and staff necessary to provide a pain-free, dignified, family-, and staff-supported death for newborns who cannot benefit from intensive, life-extending, technological support. STUDY DESIGN: Using Internet e-mail, a Delphi study with sequential questionnaires soliciting participant response, investigator analysis, and follow-up responses from participants was conducted to build a consensus document. Institutional review was granted and respondents gave consent. Recruitment was conducted at medical, ethics, nursing, and multidisciplinary organization meetings. Synthesis of 16 palliative care/end-of-life protocols developed by regional, institutional, and parent organizations was included. Participants from 93 locations in the US and 4 abroad gave feedback to 13 questions derived from clinical experience and the literature. The data underwent four rounds of analysis with 95% retention of the 101 participants over an 18-month period. RESULTS/CONCLUSION: Specific consensus-based recommendations are presented with a description of palliative care; categories of candidates; planning and education needed to begin palliative care services; relationships between community and tertiary centers; components of optimally supported neonatal death; family care, including cultural, spiritual, and practical needs; ventilator withdrawal, including pain and symptom management; recommendations when death does not occur after cessation of life-extending interventions; family follow-up care; and necessary ongoing staff support.
2002
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1038/sj.jp.7210687" target="_blank" rel="noreferrer">10.1038/sj.jp.7210687</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
Carter B
Catlin A
Clinical Protocols
Counseling
Culture
Delphi Technique
Empathy
Euthanasia
Family/ethnology/psychology
Humans
Infant
Internet
Journal Article
Journal Of Perinatology
Neonatology/standards
Newborn
Non-U.S. Gov't
Palliative Care/standards
Passive/psychology
Professional-family Relations
Questionnaires
Research Support
Social Support
Terminal Care/standards
Tissue and Organ Procurement
United States
Ventilator Weaning
-
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/10.1258/1357633042614465" target="_blank" rel="noreferrer">http://doi.org/10.1258/1357633042614465</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
Paediatric palliative home care with Internet-based video-phones: lessons learnt
Publisher
An entity responsible for making the resource available
Journal Of Telemedicine And Telecare
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; home care services; Internet; Queensland; PPC Book Chapter 2011 (Kim Widger); Palliative Care/organization & administration; Child Health Services/organization & administration; Hospital-Based/organization & administration; Remote Consultation/organization & administration
Creator
An entity primarily responsible for making the resource
Bensink M; Armfield N; Russell TG; Irving H; Wootton R
Description
An account of the resource
We have designed and tested an Internet-based video-phone suitable for use in the homes of families in need of paediatric palliative care services. The equipment uses an ordinary telephone line and includes a PC, Web camera and modem housed in a custom-made box. In initial field testing, six clinical consultations were conducted in a one-month trial of the videophone with a family in receipt of palliative care services who were living in the outer suburbs of Brisbane. Problems with variability in call quality--namely audio and video freezing, and audio break-up--prompted further laboratory testing. We completed a programme of over 250 test calls. Fixing modem connection parameters to use the V.34 modulation protocol at a set bandwidth of 24 kbit/s improved connection stability and the reliability of the video-phone. In subsequent field testing 47 of 50 calls (94%) connected without problems. The freezes that did occur were brief (with greatly reduced packet loss) and had little effect on the ability to communicate, unlike the problems arising in the home testing. The low-bandwidth Internet-based video-phone we have developed provides a feasible means of doing telemedicine in the home.
2004
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1258/1357633042614465" target="_blank" rel="noreferrer">10.1258/1357633042614465</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
Armfield N
Backlog
Bensink M
Child
Child Health Services/organization & administration
home care services
Hospital-Based/organization & administration
Humans
Internet
Irving H
Journal Article
Journal Of Telemedicine And Telecare
Palliative Care/organization & Administration
PPC Book Chapter 2011 (Kim Widger)
Queensland
Remote Consultation/organization & administration
Russell TG
Wootton R
-
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/10.1097/00008480-200108000-00004" target="_blank" rel="noreferrer">http://doi.org/10.1097/00008480-200108000-00004</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
Transition from pediatric to adult-oriented health care: a challenge for patients with chronic disease
Publisher
An entity responsible for making the resource available
Current Opinion In Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2001
Subject
The topic of the resource
Humans; United States; Adult; Needs Assessment; Professional-Patient Relations; Self Care; Internet; adolescent; Models; Adolescent Transitions; Continuity of Patient Care/organization & administration; Chronic Disease/therapy; Adolescent Health Services/organization & administration; disabled children; Organizational
Creator
An entity primarily responsible for making the resource
Callahan ST; Winitzer RF; Keenan P
Description
An account of the resource
Pediatric providers can expect that 1 of every 10 patients they see will have a chronic, activity-limiting health condition. Thanks to earlier diagnosis and improved therapies, most of these children will live well into adulthood. This means that eventually they will require care that focuses on adult health issues. Providers in the United States and around the world are recognizing the need for coordinated processes to transition adolescents and young adults with chronic conditions to adult health care. These models rely on the participation and input of the adolescent, his or her family, and pediatric and adult health professionals. This paper distinguishes medical transition from medical transfer; discusses potential barriers to transition; examines new initiatives to develop and study transition models; and reviews federal legislation influencing health care transitions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/00008480-200108000-00004" target="_blank" rel="noreferrer">10.1097/00008480-200108000-00004</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
2001
Adolescent
Adolescent Health Services/organization & administration
Adolescent Transitions
Adult
Backlog
Callahan ST
Chronic Disease/therapy
Continuity Of Patient Care/organization & Administration
Current Opinion In Pediatrics
Disabled Children
Humans
Internet
Journal Article
Keenan P
Models
Needs Assessment
Organizational
Professional-patient Relations
Self Care
United States
Winitzer RF
-
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
January 2018 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
January 2018 List
URL Address
<a href="http://doi.org/10.1111/jocn.13624" target="_blank" rel="noreferrer">http://doi.org/10.1111/jocn.13624</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
Intensive care bereavement practices across New Zealand and Australian intensive care units: a qualitative content analysis
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
2017
Subject
The topic of the resource
Bereavement; Critical Care Nursing; Practice Patterns Nurses'; Adult; Australia; bereavement; Child; Death; dying; end-of-life care; Family; Female; Humans; Intensive Care; Intensive Care Units; Internet; Male; New Zealand; nursing role; Patient-Centered Care; Surveys and Questionnaires
Creator
An entity primarily responsible for making the resource
Coombs M; Mitchell M; James S; Wetzig K
Description
An account of the resource
BACKGROUND: End-of-life and bereavement care is an important consideration in intensive care. This study describes the type of bereavement care provided in intensive care units across Australia and New Zealand. DESIGN: Inductive qualitative content analysis was conducted on free-text responses to a web-based survey exploring unit-based bereavement practice distributed to nurse managers in 229 intensive care units in New Zealand and Australia. RESULTS: A total of 153 (67%) surveys were returned with 68 respondents making free-text responses. Respondents were mainly Australian (n = 54, 85.3%), from the public sector (n = 51, 75%) and holding Nurse Unit Managers/Charge Nurse roles (n = 39, 52.9%). From the 124 free-text responses, a total of 187 individual codes were identified focussing on bereavement care practices (n = 145, 77.5%), educational provision to support staff (n = 15, 8%) and organisational challenges (n = 27, 14.4%). Bereavement care practices described use of memory boxes, cultural specificity, annual memorial services and use of community support services. Educational provision identified local in-service programmes, and national bereavement courses for specialist bereavement nurse coordinators. Organisational challenges focussed on lack of funding, especially for provision of bereavement follow-up. CONCLUSIONS: This is the first Australasian-wide survey, and one of the few international studies, describing bereavement practices within intensive care, an important aspect of nursing practice. However, with funding for new bereavement services and education for staff lacking, there are continued challenges in developing bereavement care. Given knowledge about the impact of these areas of care on bereaved family members, this requires review. RELEVANCE TO CLINICAL PRACTICE: Nurses remain committed to supporting bereaved families during and following death in intensive care. With limited resource to support bereavement care, intensive care nurses undertake a range of bereavement care practices at time of death, and after death through family bereavement follow-up.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/jocn.13624" target="_blank" rel="noreferrer">10.1111/jocn.13624</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).
2017
Adult
Australia
Bereavement
Child
Coombs M
Critical Care Nursing
Death
Dying
End-of-life Care
Family
Female
Humans
Intensive Care
Intensive Care Units
Internet
James S
January 2018 List
Journal of Clinical Nursing
Male
Mitchell M
New Zealand
nursing role
Patient-centered Care
Practice Patterns Nurses'
Surveys And Questionnaires
Wetzig K
-
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
July 2017 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Caring Decisions: The Development Of A Written Resource For Parents Facing End-of-life Decisions
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
2015
Subject
The topic of the resource
Adult;Advance Care Planning/ethics;Advance Care Planning/standards;Attitude Of Health Personnel;Australia;Child;Consumer Health Information/methods;Decision Making/ethics;Humans;Internet;Parents/education;Parents/psychology;Pilot Projects;Professional-family Relations;Publications;Terminal Care/methods;Terminal Care/standards
Creator
An entity primarily responsible for making the resource
Xafis V; Gillam L; Hynson J; Sullivan J; Cossich M; Wilkinson D
Description
An account of the resource
BACKGROUND: Written resources in adult intensive care have been shown to benefit families facing end of life (EoL) decisions. There are few resources for parents making EoL decisions for their child and no existing resources addressing ethical issues. The Caring Decisions handbook and website were developed to fill these gaps. AIM: We discuss the development of the resources, modification after reviewer feedback and findings from initial pilot implementation. DESIGN: A targeted literature review-to identify resources and factors that impact on parental EoL decision-making; development phase-guided by the literature and the researchers' expertise; consultation process-comprised a multi-disciplinary panel of experts and parents; pilot evaluation study-hard-copy handbook was distributed as part of routine care at an Australian Children's Hospital. SETTING/PARTICIPANTS: Twelve experts and parents formed the consultation panel. Eight parents of children with life-limiting conditions and clinicians were interviewed in the pilot study. RESULTS: Numerous factors supporting/impeding EoL decisions were identified. Caring Decisions addressed issues identified in the literature and by the multidisciplinary research team. The consultation panel provided overwhelmingly positive feedback. Pilot study parents found the resources helpful and comforting. Most clinicians viewed the resources as very beneficial to parents and identified them as ideal for training purposes. CONCLUSIONS: The development of the resources addressed many of the gaps in existing resources. The consultation process and the pilot study suggest these resources could be of significant benefit to parents and clinicians.
Identifier
An unambiguous reference to the resource within a given context
10.1089/jpm.2015.0048
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).
2015
Adult
Advance Care Planning/ethics
Advance Care Planning/standards
Attitude Of Health Personnel
Australia
Child
Consumer Health Information/methods
Cossich M
Decision Making/ethics
Gillam L
Humans
Hynson J
Internet
Journal of Palliative Medicine
July 2017 List
Parents/education
Parents/psychology
Pilot Projects
Professional-family Relations
Publications
Sullivan J
Terminal Care/methods
Terminal Care/standards
Wilkinson D
Xafis V
-
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
September 2017 List
Notes
<p>Using Smart Source Parsing ( (pp Date of Publication: 01 Sep 2015</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/.
Title
A name given to the resource
Volunteer Activity In Specialist Paediatric Palliative Care: A National Survey
Publisher
An entity responsible for making the resource available
Bmj Supportive & Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2015
Subject
The topic of the resource
Statistics And Numerical Data; Adolescent; Adult; Cross-sectional Study; England; Female; Health Care Survey; Home Care; Hospice; Hospice Care; Hospital Volunteer; Human; Internet; Male; Organization And Management; Palliative Therapy; Pediatrics; Procedures; Questionnaire; Specialization; Young Adult
Creator
An entity primarily responsible for making the resource
Burbeck R; Low J; Sampson E L; Scott R; Bravery R; Candy B
Description
An account of the resource
OBJECTIVE: To assess the involvement of volunteers with direct patient/family contact in UK palliative care services for children and young people. METHOD: Cross-sectional survey using a web-based questionnaire. SETTING: UK specialist paediatric palliative care services. PARTICIPANTS: Volunteer managers/coordinators from all UK hospice providers (n=37) and one National Health Service palliative care service involving volunteers (covering 53 services in total). MAIN OUTCOMES: Service characteristics, number of volunteers, extent of volunteer involvement in care services, use of volunteers' professional skills and volunteer activities by setting. RESULTS: A total of 21 providers covering 31 hospices/palliative care services responded (30 evaluable responses). Referral age limit was 16-19 years in 23 services and 23-35 years in seven services; three services were Hospice at Home or home care only. Per service, there was a median of 25 volunteers with direct patient/family contact. Services providing only home care involved fewer volunteers than hospices with beds. Volunteers entirely ran some services, notably complementary therapy and pastoral/faith-based care. Complementary therapists, school teachers and spiritual care workers most commonly volunteered their professional skills. Volunteers undertook a wide range of activities including emotional support and recreational activities with children and siblings. CONCLUSIONS: This is the most detailed national survey of volunteer activity in palliative care services for children and young people to date. It highlights the range and depth of volunteers' contribution to specialist paediatric palliative care services and will help to provide a basis for future research, which could inform expansion of volunteers' roles.
Identifier
An unambiguous reference to the resource within a given context
10.1136/bmjspcare-2012-000355
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).
2015
Adolescent
Adult
BMJ Supportive & Palliative Care
Bravery R
Burbeck R
Candy B
Cross-sectional Study
England
Female
Health Care Survey
Home Care
Hospice
Hospice Care
Hospital Volunteer
Human
Internet
Low J
Male
Organization And Management
Palliative Therapy
Pediatrics
Procedures
Questionnaire
Sampson E L
Scott R
September 2017 List
Specialization
Statistics And 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
October 2017 List
Notes
<p>Using Smart Source Parsing<br />Date of Publication: 2017</p>
URL Address
<a href="https://www.sciencedirect.com/science/article/pii/S0929693X1730252X?via%3Dihub">https://doi.org/10.1016/j.arcped.2017.06.015</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 Mourning After A Perinatal Loss]
Publisher
An entity responsible for making the resource available
Archives De Pediatrie
Date
A point or period of time associated with an event in the lifecycle of the resource
2017
Subject
The topic of the resource
Family; Human; Infant; Internet; Neonatologist; Non Profit Organization; Palliative Therapy
Creator
An entity primarily responsible for making the resource
de Mezerac I; Caeymaex L
Description
An account of the resource
The loss of a close friend or relative is always an ordeal. When this loved one is a baby, born or even unborn, a number of specific aspects have been reported by parents and researchers. The specificities of perinatal mourning have been progressively recognized since the 1970s, with increasing literature on this topic. Its complexity should be acknowledged by healthcare professionals who cope with perinatal loss, to allow them to offer adapted familial support. This paper is written by a mother, a founding member of a French nonprofit organization supporting parents in case of a prenatal or postnatal life-limiting disorder (Association SPAMA, soins palliatifs et accompagnement en maternite) with an internet support forum and a neonatologist involved in research with parents after the loss of their baby. It attempts to describe how parents experience this situation and how palliative care provides a source of inspiration to families and helps them give meaning to these situations.
Identifier
An unambiguous reference to the resource within a given context
<a href="https://www.sciencedirect.com/science/article/pii/S0929693X1730252X?via%3Dihub">10.1016/j.arcped.2017.06.015</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).
2017
Archives de Pediatrie
Caeymaex L
de Mezerac I
Family
Human
Infant
Internet
Neonatologist
Non Profit Organization
October 2017 List
Palliative 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
July 2016 List
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Families' Priorities In Life-limiting Illness: Improving Quality With Online Empowerment
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
2016
Subject
The topic of the resource
Adolescent; Child; Child Preschool; Disabled Children/psychology; Family; Female; Hospice; Humans; Infant; Internet; Longitudinal Studies; Male; Palliative Care; Parents/psychology; Power (psychology); Quality Of Life/psychology; Social Support; Surveys And Questionnaires; United Kingdom; Young Adult
Child; Hospice; Outcome; Parents; Quality Of Life
Creator
An entity primarily responsible for making the resource
Harris N; Beringer A; Fletcher M
Description
An account of the resource
OBJECTIVE:
Improving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.
INTERVENTION:
MyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient-professional communications and also to enhance patient empowerment within healthcare dialogues.
DESIGN:
A longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.
PATIENTS AND SETTING:
Thirty-two families of children with LLIs, attending three children's hospices in one UK region.
OUTCOME MEASURES:
Website access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.
RESULTS:
23/32 families chose to use the website. Mean duration of use was 106 days (range 2-301), with families choosing two or three parameters (range 1-15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45-3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.
CONCLUSIONS:
The identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/
Identifier
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doi: 10.1136/archdischild-2015-308769
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).
2016
Adolescent
Archives of Disease in Childhood
Beringer A
Child
Child Preschool
Disabled Children/psychology
Family
Female
Fletcher M
Harris N
Hospice
Humans
Infant
Internet
July 2016 List
Longitudinal Studies
Male
Outcome
Palliative Care
Parents
Parents/psychology
Power (psychology)
Quality Of Life
Quality Of Life/psychology
Social Support
Surveys And Questionnaires
United Kingdom
Young Adult