1
40
19
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Title
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November 2023 List
Text
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November List 2023
URL Address
<a href="http://doi.org/10.1093/geronb/gbac189" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/geronb/gbac189</a>
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Gender Differences in Depressive Symptoms Following Child Death in Later
Publisher
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Journals of Gerontology: Series B
Date
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2023
Subject
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Child; Female; Male; Prognosis; United States; Risk Factors; Bereavement; Parent-Child Relations; Adult; Age Factors; Mortality; Sex Factors; Middle Age; Adaptation Psychological; Fathers; Aged; Depression; Mother-Child Relations; Mothers; Human; Father-Child Relations; Evaluation; Only Child; Funding Source; Trends; Vulnerability; Psychosocial Factors; Comparative Studies; Recovery; In Adulthood; In Middle Age; In Old Age
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Mellencamp KA
Description
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Objectives: This study examined short- and long-term psychological adjustment to parental bereavement in later life for mothers and fathers. Methods: Using 9 waves of data from the United States (1998-2014 Health and Retirement Study), I estimated trajectories of mothers' and fathers' depressive symptoms surrounding child death in later life, highlighting gender differences in adjustment. Moderation analyses were performed to uncover heterogeneous trajectories across parental characteristics. Results: Mothers were more likely to experience child death and reported higher depressive symptoms prior to parental bereavement than fathers. Mothers and fathers who lost a child reported an increase in depressive symptoms that diminished over time. The short-term elevation in depressive symptoms was marginally greater for mothers than fathers, but depressive symptoms declined at a faster rate for mothers than fathers in the years following the death. These counterbalancing changes resulted in mothers and fathers returning to their respective prebereavement levels of depressive symptoms between 2 and 4 years postbereavement. Parental age moderated trajectories distinctly by gender, and the presence of surviving children buffered the impact of child death on depressive symptoms for mothers but not fathers. Discussion: Mothers more often experience child death in later life and their adjustment process differs from that of fathers, underscoring the salience of gender in shaping how older parents respond to the death of a child. Older parents and mothers without surviving children are vulnerable to prolonged elevations in depressive symptoms following the death of a child in later life.
Identifier
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<a href="http://doi.org/10.1093/geronb/gbac189" target="_blank" rel="noreferrer noopener">10.1093/geronb/gbac189</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).
2023
Adaptation Psychological
Adult
Age Factors
Aged
Bereavement
Child
Comparative Studies
Depression
Evaluation
Father-child Relations
Fathers
Female
Funding Source
Human
In Adulthood
In Middle Age
In Old Age
Journals of Gerontology Series B: Psychological Sciences & Social
Male
Mellencamp KA
Middle Age
Mortality
Mother-child Relations
Mothers
November List 2034
Only Child
Parent-child Relations
Prognosis
Psychosocial Factors
Recovery
Risk Factors
Sex Factors
Trends
United States
VULNERABILITY
-
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Title
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August 2023 List
Text
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August List 2023
URL Address
<a href="http://doi.org/10.1111/mcn.13473" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/mcn.13473</a>
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Bereaved mothers' experience of expressing and donating breast milk: An interpretative phenomenological study
Publisher
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Maternal & Child Nutrition
Date
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2023
Subject
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Female; Attitude to Death; Bereavement; Grief; Adult; Altruism; Mothers; Phenomenological Research; Human; Life Experiences; Evaluation; Northern Ireland; Thematic Analysis; Coping; Perinatal Death; Funding Source; Milk Banks; Milk, Human; Maternal Attitudes; Semi-Structured Interview; Psychosocial Factors; Maternal Role; Milk Ejection; Autonomy; Milk Expression
Creator
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Ward G; Adair P; Doherty N; McCormack D
Description
An account of the resource
Abstract Perinatal loss is a devastating event for any mother. What is often overlooked is a mothers continued ability to lactate following the death of her child. Donor breast milk is a commodity highly sought after given its value for feeding sick babies resident in Neonatal Intensive Care Units. This study aimed to explore the lived experience of mothers who have expressed and donated their breast milk following the loss of their infant. Seven bereaved mothers who donated milk to the Human Milk Bank in Northern Ireland were recruited. These women took part in semistructured interviews, which explored their experiences of perinatal loss and the role that expression/donation played for them in their grief. Their accounts were analysed using a qualitative interpretative phenomenological analysis (IPA) method. After transcription and analysis, three superordinate themes emerged; (1) fulfilling the mother role; (2) the power of being able to 'Do'; (3) making good from the bad. The stories of these women reflect the independent and individual nature of grief. Each mother gained a great deal of comfort in having the ability to express milk. For some this created a physical connection to their child, for others, it created time alone to process what had happened and for all, it created a sense of autonomy and ownership in what was otherwise a very turbulent time in their lives.
Identifier
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<a href="http://doi.org/10.1111/mcn.13473" target="_blank" rel="noreferrer noopener">10.1111/mcn.13473</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).
2023
Adair P
Adult
Altruism
Attitude To Death
August List 2051
Autonomy
Bereavement
Coping
Doherty N
Evaluation
Female
Funding Source
Grief
Human
Life Experiences
Maternal & Child Nutrition
Maternal Attitudes
Maternal Role
McCormack D
Milk Banks
Milk Ejection
Milk Expression
Milk, Human
Mothers
Northern Ireland
Perinatal Death
Phenomenological Research
Psychosocial Factors
Semi-Structured Interview
Thematic Analysis
Ward G
-
Dublin Core
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Title
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April 2023 List
Text
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April List 2023
URL Address
<a href="https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/256521" target="_blank" rel="noreferrer noopener">https://he02.tci-thaijo.org/index.php/PRIJNR/article/view/256521 http://doi.org/</a>
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Title
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Grief Journey: Perception and Response Based on Cultural Beliefs in Thai Women Experiencing Perinatal Death
Publisher
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Pacific Rim International Journal of Nursing Research
Date
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2022
Subject
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Female; Anxiety; Grief; Adult; Health Personnel; Quality of Health Care; Adolescence; Self Concept; Medical Records; Emotions; Interviews; Purposive Sample; Qualitative Studies; Culture; Fear; Descriptive Research; Human; Hope; Reflection; Content Analysis; Field Notes; Evaluation; Hospitals Community; Women; Health Knowledge; Perinatal Death; Psychosocial Factors; Cultural Competence; Cultural Sensitivity; Forgiveness; Self-Talk; Social Norms; Thailand
Creator
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Nedruetai P; Puangpaka K; Bih-Ching S
Description
An account of the resource
Studying perinatal death needs to involve cultural beliefs influencing women's perceptions and responses to illuminate their grief journey following the loss of their baby. There is an urgent need to provide a deep understanding in this area that will be useful in meeting the unmet needs of women experiencing perinatal death. This qualitative study explored the grief journey set among cultural beliefs of Thai women experiencing perinatal death. Twenty-five participants who experienced perinatal death between six months and two years before participating in the study were recruited by purposive sampling through the medical history records of four community hospitals in a province of Thailand. Data were collected by in-depth interviews from September 2020 to March 2021 until data saturation. Content analysis was applied to analyze the data. Findings revealed four themes: 1) bewildering in the dark (wondering what is wrong, anxiety and fear about the anticipated loss, flickering hope); 2) grief response (the world suddenly shuts down, overwhelming sorrow); 3) self-reflection (by talking to self, talking to others); and 4) self-healing (compliance with cultural beliefs, the forgiveness of self and others). In conclusion, healthcare providers should be equipped with essential knowledge for addressing issues holistically based on cultural sensitivity that will be useful in enhancing the utmost ability of women in moving through their grief.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></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).
2022
Adolescence
Adult
anxiety
April List 2023
Bih-Ching S
Content Analysis
cultural competence
cultural sensitivity
Culture
Descriptive Research
Emotions
Evaluation
Fear
Female
field notes
Forgiveness
Grief
Health Knowledge
Health Personnel
Hope
Hospitals Community
Human
Interviews
Medical Records
Nedruetai P
Pacific Rim International Journal of Nursing Research
Perinatal Death
Psychosocial Factors
Puangpaka K
Purposive Sample
Qualitative Studies
Quality Of Health Care
Reflection
Self Concept
Self-Talk
Social Norms
Thailand
Women
-
Dublin Core
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Title
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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.
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April List 2023
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<a href="https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338" target="_blank" rel="noreferrer noopener">https://www.proquest.com/openview/355f4d9dd4d9279271658e52340a3bd4/1?pq-origsite=gscholar&cbl=1606338 http://doi.org/</a>
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Title
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Health Professionals' Views on Pediatric Palliative Care: A Mixed Methods Systematic Review
Publisher
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International Journal of Caring Sciences
Date
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2022
Subject
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Palliative Care; Professional-Family Relations; Terminal Care; Communication; Collaboration; Hospitals; Attitude of Health Personnel; Professional-Patient Relations; Health Services Accessibility; Human; Education; Reward; Evaluation; Pediatric Care; PubMed; Communities; Multidisciplinary Care Team; Systematic Review; Multimethod Studies
Creator
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Anastasopoulou E; Dousis E
Description
An account of the resource
Introduction: Providing care for children in the end of life entails special challenges and exceptional requirements for all health professionals involved. Aim: The aim of the study is to explore the views of health professionals about pediatric palliative care. Methods: Systematic review of published relevant studies in PubMed and Scopus. The bibliography search took place for articles published from 2017 to 2022. The study included articles on qualitative, quantitative or mixed studies of health professionals in hospitals or in the community that provided pediatric palliative care to people <25 years of age, published from 2015 onwards, exploring their views on palliative care. Results: The results of 15 studies performed on 1,505 health professionals showed that their views focused on the rewards gained and challenges experienced from providing pediatric palliative care, the relationship they develop with the child and family, the collaboration and role of the interdisciplinary team, the role of communication and education, and to the effect of the care on patients and their families as well as on their own personal lives. They identify barriers at individual, team, organizational, hospital, community, and policy level. To address these barriers, they used strategies to support health professionals, patients and families, work and care organization strategies, strategies to improve relationships, communication, education, collaboration and intercultural care. Conclusions: Pediatric palliative care is considered both a reward and a challenge for health professionals but it is obvious that their poor and/or inadequate education and insufficient organization of work and care is in need of improvement in order to provide it effectively.
Identifier
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<a href="http://doi.org/" target="_blank" rel="noreferrer noopener"></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).
2022
Anastasopoulou E
April List 2023
Attitude Of Health Personnel
Collaboration
Communication
Communities
Dousis E
Education
Evaluation
Health Services Accessibility
Hospitals
Human
International Journal of Caring Sciences
Multidisciplinary Care Team
Multimethod Studies
Palliative Care
Pediatric Care
Professional-family Relations
Professional-patient Relations
PubMed
Reward
Systematic Review
Terminal Care
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Title
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January 2023 List
Text
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January List 2023
URL Address
<a href="http://doi.org/10.1080/24694193.2022.2047828" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/24694193.2022.2047828</a>
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Sudden Unexpected Death in Childhood in Greater Manchester (United Kingdom): A Five-Year Review (2015–2020)
Publisher
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Comprehensive Child & Adolescent Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Bereavement; Cause of Death; Child Pediatricians; Child Welfare; Childhood; Coping; Death; Emergency Service; England; Evaluation; Family; Family Support; Infancy; Parents; Police Home Visits; Psychosocial Factors; Sudden
Creator
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Quinn S; Dierckx E; Long T; Rowland AG
Description
An account of the resource
The sudden, unexpected death of a child (SUDC) is a devastating experience. It is vital that supportive and investigative services are effective and promote the best outcomes for families. Analysis of 5 years of data from 309 SUDC cases in Greater Manchester, United Kingdom (UK) shows how a number of key service outcomes can be measured and achieved through a raft of actions which are commensurate with and exceed the service level recommended by the UK Government. Annual reports covering the work of the Greater Manchester SUDC team are compiled from audit forms completed by the attending SUDC pediatrician for each case. Data from these reports from April 1, 2015 to March 31, 2020 were analyzed. Most cases happened out of normal working hours, predominantly on Sundays. This supports the need for a 24-hour, 7 days per week SUDC service to enable early investigation and timely support for families. The review demonstrated that the Greater Manchester model is able to deliver this in a rapid response with early attendance in emergency departments and early home visits; effective joint agency working with police, children's social services, and other agencies; and provision of support to families. The proposed instigation of a key worker role in the SUDC team is a welcome development. This is central to ameliorating the experience for parents by providing bereavement support separate from the investigative role of the SUDC team. Research is needed into the role of the key worker, potentially as a dedicated bereavement nurse, and understanding of families' experiences to ensure that support is optimal.
Identifier
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<a href="http://doi.org/10.1080/24694193.2022.2047828" target="_blank" rel="noreferrer noopener">10.1080/24694193.2022.2047828</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).
Bereavement
Death
2022
Cause Of Death
Child Pediatricians
Child welfare
childhood
Comprehensive Child & Adolescent Nursing
Coping
Dierckx E
Emergency Service
England
Evaluation
Family
family support
Infancy
January List 2023
Long T
Parents
Police Home Visits
Psychosocial Factors
Quinn S
Rowland AG
Sudden
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Title
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October 2022 List
Text
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October 2022 List
URL Address
<a href="http://doi.org/10.1089/jpm.2022.0154">http://doi.org/10.1089/jpm.2022.0154</a>
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"Between Wings of Hope and Fear": Muslim Parents' Experiences with the American Health Care System
Publisher
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Journal of Palliative Medicine
Date
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2022
Subject
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qualitative; barrier; health; transcription; pediatrics; communication; human; article; child; female; male; interview; fear; population; sample; patients; research; evaluation; care; clinical; genetic; person; analysis; size; system; content; semi; structured; United; marginalized; married; Muslim; States; thematic; wing
Creator
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Kolmar A; Kamal AH; Steinhauser KE
Description
An account of the resource
Background and Objectives: Historically marginalized religious and cultural groups are at risk for lower quality of care than majority groups. No study to date specifically queries Muslim experiences with the American health care system (AHCS). We performed a thematic analysis of Muslim parents' interactions with the AHCS and how their background informs their approach to care. Method(s): This was a qualitative study of Muslim parents of children with life-limiting conditions in the Research Triangle Area from December 2019 to March 2019. We conducted semistructured interviews with parents to assess their experiences with the AHCS. We probed interview transcripts using descriptive content analysis with NVivo10. Result(s): We interviewed 10 parents in the Research Triangle Area. All patients were female, most were married, most spoke at least one other language in addition to English, and most were not born in the United States. Several themes emerged highlighting open communication with care teams, willingness to share religious affiliations, and the importance of leaning into faith and accepting God's will. Conclusion(s): A thematic analysis of Muslim parents' interactions with the AHCS describes value in honest communication, mixed concerns about how providers will react to their religious affiliation, and emphasizes the importance of leaning heavily into faith and accepting God's plan. Future studies evaluating needs of Muslim patients, especially those with different diagnoses, language barriers, and a larger sample size will further delineate needs to minimize inequalities in care.
Identifier
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<a href="http://doi.org/10.1089/jpm.2022.0154">10.1089/jpm.2022.0154</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).
2022
Analysis
Article
barrier
CARE
Child
Clinical
Communication
content
Evaluation
Fear
Female
Genetic
Health
Human
Interview
Journal of Palliative Medicine
Kamal AH
Kolmar A
Male
marginalized
married
Muslim
October 2022 List
Patients
Pediatrics
person
Population
Qualitative
Research
sample
semi
size
States
Steinhauser KE
structured
system
thematic
transcription
United
wing
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Title
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May 2022 List
Text
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Citation List Month
May 2022 List
URL Address
<a href="http://doi.org/10.1186/s12904-022-00921-8" target="_blank" rel="noreferrer noopener">http://doi.org/10.1186/s12904-022-00921-8</a>
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A realist evaluation of a home-based end of life care service for children and families: what works, for whom, how, in what circumstances and why?
Publisher
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BMC Palliative Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Subject
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Children; End-of-life care; Evaluation; Families; Home-based
Creator
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Malcolm C; Knighting K
Description
An account of the resource
Background: Children's palliative and end of life care is underpinned internationally by a commitment to provide care and support in the family's preferred place, which may include home, hospital or hospice. Limited evidence on models of best practice for the provision of children's end of life care at home is available. This realist evaluation of a novel, home-based end of life care service explored what works for whom, how, in what circumstances and why. Method(s): Adopting principles of realist evaluation, an initial programme theory (IPT) was developed from multiple data sources including a scoping review, service documentation review, audit of service data, and qualitative data gathered from stakeholder (n = 6) and family interviews (n = 10). Three families who had used the service were identified as case studies and interviews with professionals involved in their care (n = 20) were conducted to test the IPT. The findings informed the revised CMOs illustrating the contexts and mechanisms which underpin how and why the service works and for whom. Result(s): CMO configurations were identified explaining how and why the service works for families across five core components: anticipatory approach to care planning and delivery, advance care planning, service responsiveness and flexibility, 24/7 nurse-led service with 24-h medical support, and partnership working. Key mechanisms include establishing trusting relationships, building skills and parent confidence to deliver care, early advance care planning discussions with clear documentation, providing a single point of contact for families, workforce planning and resources to deliver the service as intended, effective communication and leadership within and between providers of the service, and use of joint policies and procedures. Recommendations for future development and expansion of the service are also discussed. Conclusion(s): The findings highlight core components making this service a success and areas of challenge which continue to be addressed as the service develops. With increasing demand for home-based end of life care for children these components provide a structure which can help to guide service development to meet the needs of these families in other regions to ensure that children and families receive good quality care in their place of choice. Copyright © 2022, The Author(s).
Identifier
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<a href="http://doi.org/10.1186/s12904-022-00921-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-022-00921-8</a>
2022
BMC Palliative Care
Children
End-of-life Care
Evaluation
Families
home-based
Knighting K
Malcolm C
May 2022 List
-
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Title
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December 2021 List
Text
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Citation List Month
December 2021 List
URL Address
<a href="http://doi.org/10.2147/amep.s334872" target="_blank" rel="noreferrer noopener">http://doi.org/10.2147/amep.s334872</a>
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Title
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Ongoing Value and Practice Improvement Outcomes from Pediatric Palliative Care Education: The Quality of Care Collaborative Australia
Publisher
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Advances in Medical Education and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
The topic of the resource
education outcomes; evaluation; medical education; palliative care; pediatrics; practice improvements
Creator
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Slater PJ; Osborne CJ; Herbert AR
Description
An account of the resource
PURPOSE: Novice and experienced professionals who care for children with life limiting conditions throughout Australia were provided with pediatric palliative care (PPC) education through the Quality of Care Collaborative Australia (QuoCCA). Impact evaluation has shown this education to be beneficial. This study examines the longer term outcomes reported by the participants more than 4 months following education. METHODS: An online survey measuring quantitative and qualitative education outcomes was sent to all participants of QuoCCA 2 education throughout Australia, at least 4 months following their education. There were 152 respondents between February 2018 and June 2020. RESULTS: More than 4 months after the QuoCCA education, 98% of respondents rated it as extremely valuable or valuable and 78% of respondents rated it extremely or very helpful in improving clinical practice. Improvements in knowledge, skills or confidence were reported by 90% or more respondents in the areas of PPC referral, responding to psychosocial needs, the benefits of the PPC approach, PPC resources and communication skills. Between 84% and 89% of respondents reported improvements in advance care planning, assessment and intervention, responding to physical needs, supporting spiritual needs and supporting health professionals and self care. Providing bereavement care improved in 85% of responses. The most valuable aspects of the education, changes in practice and barriers to the implementation of learning were discussed. CONCLUSION: The interprofessional QuoCCA education in PPC continued to provide value and clinical practice improvements for the majority of respondents more than four months after the session. Respondents particularly mentioned improvements in awareness of the network of care, the practical management of patients and communication skills. Reflection on clinical practice, in a proactive clinical learning environment, enabled the translation of education into improvements to the quality of PPC.
Identifier
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<a href="http://doi.org/10.2147/amep.s334872" target="_blank" rel="noreferrer noopener">10.2147/amep.s334872</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).
2021
Advances in Medical Education and Practice
December 2021 List
education outcomes
Evaluation
Herbert AR
Medical Education
Osborne CJ
Palliative Care
Pediatrics
practice improvements
Slater PJ
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Title
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Treatment of Symptoms in Children with Q3 Conditions Scoping Review Results
Text
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<a href="http://doi.org/10.1177/0883073812441999" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/0883073812441999</a>
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Title
A name given to the resource
Movement disorder in ataxia-telangiectasia: treatment with amantadine sulfate
Publisher
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Journal of Child Neurology
Date
A point or period of time associated with an event in the lifecycle of the resource
2013
Subject
The topic of the resource
Adolescent; Amantadine/tu [Therapeutic Use]; Antiparkinson Agents/Antiparkinson [Therapeutic Use]; Ataxia Telangiectasia/co [Complications]; Child; Preschool; Disability; Evaluation; Humans; Movement Disorders/dt [Drug Therapy]; Movement Disorders/et [Etiology]; Neurologic Examination; Prospective Studies; Severity of Illness Index; 0 (Antiparkinson Agents); BF4C9Z1J53 (Amantadine); tone and motor problems; ataxia telangiectasia; pharmacologic intervention; amantadine sulfate
Creator
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Nissenkorn A; Hassin-Baer S; Lerman S F; Levi Y B; Tzadok M; Ben-Zeev B
Description
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Ataxia-telangiectasia is a cerebellar neurodegenerative disorder presenting with ataxia, chorea, myoclonus, and bradykinesia. Literature on treatment of movement disorders is scarce. We treated 17 children (aged 11.2 +/- 3.9 years) for 8 weeks with the dopaminergic and anti-N-methyl-d-aspartate (NMDA) agent amantadine sulfate 6.3 +/- 0.87 mg/kg/d. Ataxia was assessed by using the International Cooperative Ataxia Scale, parkinsonism by the Unified Parkinson Disease Rating Scale, and chorea/myoclonus by the Abnormal Involuntary Movement Scale. Responders were considered those patients who had at least 20% improvement in the summation of the 3 scales. Overall, 76.5% of patients were responders, with a mean 29.3% improvement. Ataxia, involuntary movements, and parkinsonism improved significantly (25.3%, 32.5%, and 29.5%, respectively); (P < .001, t test). Side effects were mild and transient, and they did not lead to drug discontinuation. Amantadine is a well-tolerated and effective treatment for motor symptoms in ataxia telangiectasia. Assessment of long-term effects and a double-blind study should follow.
Identifier
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<a href="http://doi.org/10.1177/0883073812441999" target="_blank" rel="noreferrer noopener">10.1177/0883073812441999</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).
0 (Antiparkinson Agents)
2013
Adolescent
amantadine sulfate
Amantadine/tu [Therapeutic Use]
Antiparkinson Agents/Antiparkinson [Therapeutic Use]
ataxia telangiectasia
Ataxia Telangiectasia/co [Complications]
Ben-Zeev B
BF4C9Z1J53 (Amantadine)
Child
Disability
Evaluation
Hassin-Baer S
Humans
Journal of Child Neurology
Lerman S F
Levi Y B
Movement Disorders/dt [Drug Therapy]
Movement Disorders/et [Etiology]
Neurologic Examination
Nissenkorn A
pharmacologic intervention
Preschool
Prospective Studies
Severity Of Illness Index
tone and motor problems
Tzadok M
-
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/10.1016/j.jns.2006.05.054" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jns.2006.05.054</a>
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Title
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Niemann-Pick C disease in Spain: clinical spectrum and development of a disability scale
Publisher
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Journal of the Neurological Sciences
Date
A point or period of time associated with an event in the lifecycle of the resource
2006
Subject
The topic of the resource
Adolescent; Adult; Age of Onset; Carrier Proteins/ge [Genetics]; Cerebellar Ataxia/di [Diagnosis]; Cerebellar Ataxia/ep [Epidemiology]; Cerebellar Diseases/di [Diagnosis]; Cerebellar Diseases/ep [Epidemiology]; Child; Preschool; Comorbidity; Disability; Evaluation; Dysarthria/di [Diagnosis]; Dysarthria/ep [Epidemiology]; Female; Genetic Predisposition to Disease/ge [Genetics]; Infant; feeding difficulties; sleep disturbance; tone and motor problems; NPC; tool development; scale development
Creator
An entity primarily responsible for making the resource
Iturriaga C; Pineda M; Fernandez-Valero E M; Vanier M T; Coll M J
Description
An account of the resource
OBJECTIVES: To describe the clinical evolution of Niemann-Pick C disease to identify possible factors involved in the diagnosis and severity of the disease. METHODS: A clinical database and a severity scale was created to evaluate 45 patients diagnosed with Niemann-Pick type C in the last 28 years in Spain. RESULTS: Complete clinical data were obtained from 30 patients, all were confirmed to have mutations in the NPC1 gene. Regarding clinical form, 3 were perinatal, 7 severe infantile, 6 late infantile, 11 juvenile and 3 adult. Biochemical phenotype was classic in 26. Splenomegaly was present in 28 patients (93%) with a wide range of age at detection. The first symptom of neurological disease was clumsiness, followed in 2-4 years by cerebellar signs. Ophthalmoplegia appeared 2-4 years later and became complete 1-2 years after onset. Dysarthria appeared by the time of complete ophthalmoplegia. Diagnosis was made before the onset of neurological signs in patients with the severe infantile form, at the time of onset of cerebellar signs in the late infantile form and complete ophthalmoplegia in late onset forms. CONCLUSIONS: In our series, splenomegaly is present in 96% of patients, even in late onset forms during the first years of life. Clumsiness in children with otherwise normal motor development precedes the onset of ataxia by 2-4 years in Niemann Pick type C. A disability scale could be useful for monitoring evolution, establishing possible phenotypic correlations and evaluating future therapies.
Identifier
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<a href="http://doi.org/10.1016/j.jns.2006.05.054" target="_blank" rel="noreferrer noopener">10.1016/j.jns.2006.05.054</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).
2006
Adolescent
Adult
Age of Onset
Carrier Proteins/ge [Genetics]
cerebellar ataxia/di [Diagnosis]
Cerebellar Ataxia/ep [Epidemiology]
Cerebellar Diseases/di [Diagnosis]
Cerebellar Diseases/ep [Epidemiology]
Child
Coll M J
Comorbidity
Disability
Dysarthria/di [Diagnosis]
Dysarthria/ep [Epidemiology]
Evaluation
feeding difficulties
Female
Fernandez-Valero E M
Genetic Predisposition to Disease/ge [Genetics]
Infant
Iturriaga C
Journal Of The Neurological Sciences
NPC
Pineda M
Preschool
scale development
sleep disturbance
tone and motor problems
tool development
Vanier M T
-
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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December 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
December 2019 List
URL Address
<a href="http://doi.org/10.1097/jpn.0000000000000437" target="_blank" rel="noreferrer noopener">http://doi.org/10.1097/jpn.0000000000000437</a>
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Title
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A Network Approach to Neonatal Palliative Care Education: Impact on Knowledge, Efficacy, and Clinical Practice
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Journal of Perinatal and Neonatal Nursing
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
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education; end-of-life care; evaluation; neonatal; palliative care
Creator
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Knighting K; Kirton J; Silverio SA; Shaw BNJ
Description
An account of the resource
More than 80 000 babies are admitted to specialist neonatal units in the United Kingdom every year, with approximately 2109 neonatal deaths a year; 98% in hospital. A common element in guidance and pathways to facilitate the provision of palliative care to infants and their families is the importance of good education and training to develop high-quality staff and services. This article presents a mixed-methods, sequential, explanatory design evaluation of 1 day palliative care education workshops delivered using a network-wide approach to multidisciplinary professionals. Workshops were delivered by healthcare professionals and bereaved parents and evaluated using questionnaires, adapted for neonatal staff from standardized measures, and follow-up interviews. The workshop content and shared learning approach resulted in significant improvements in participant's knowledge, attitude, self-beliefs and confidence in neonatal palliative care, enhanced awareness of services, and improved links between professionals. Participants cascaded their learning to their teams and provided examples of changes in their clinical practice following the workshop. Parent stories were identified as a very powerful component of the training, with lasting impact on participants. Formal, integrated palliative care education programs for perinatal and neonatal staff and longitudinal research into the impact on practice and the experience received by families are needed.
Identifier
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<a href="http://doi.org/10.1097/jpn.0000000000000437" target="_blank" rel="noreferrer noopener">10.1097/jpn.0000000000000437</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
December 2019 List
Education
End-of-life Care
Evaluation
Journal of Perinatal and Neonatal Nursing
Kirton J
Knighting K
Neonatal
Palliative Care
Shaw BNJ
Silverio SA
-
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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April 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
April 2019 List
URL Address
<a href="http://doi.org/10.1111/cch.12652" target="_blank" rel="noreferrer noopener">http://doi.o rg/10.1111/cch.12652</a>
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Title
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The usefulness and acceptability of a personal health record to children and young people living with a complex health condition: a realist review of the literature
Publisher
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Child: care, health and development
Date
A point or period of time associated with an event in the lifecycle of the resource
2019
Subject
The topic of the resource
implementation; communication; children and young people; evaluation; context; Personal-health record; realist review
Creator
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Diffin J; Byrne B; Kerr H; Price J; Abbott A; McLaughlin D; O'Halloran P
Description
An account of the resource
BACKGROUND: There are a growing number of children and young people (CYP) with chronic health needs or complex disabilities. Increasingly CYP with life-limiting or life-threatening conditions are surviving into adulthood. Communication between CYP, their family and health professionals can be challenging. The use of a personal-health record (PHR) is one potential strategy for improving communication by promoting CYP's health advocacy skills. However, PHR implementation has proved difficult due to technical, organisational and professional barriers. The aim of this realist review is to identify the factors which help or hinder the use of PHRs with CYP living with a complex health condition. METHODS: Systematic realist review. Literature was sourced from six databases: Medline, Embase, CINAHL, PsychInfo, The Cochrane Library and Science Direct (from 1946 to August Week 3 2018). The web was searched to identify grey literature. Articles were sourced from reference lists of included studies. Data were extracted using a standardised data extraction form. Two reviewers completed data extraction and synthesis. Methodological rigor was assessed using the relevant Critical Appraisal Skills Programme (CASP) tool. RESULTS: Nine articles were included. Contextual factors which helped implementation included the CYP having a high perception of need for a PHR, and a high level of desire for self-management. Service providers and CYP need knowledge about the purpose and benefits of the PHR, and organisations need a dedicated person to facilitate PHR use. Mechanisms triggered by the PHR included improved understanding and knowledge of healthcare condition(s) for CYP, an increased feeling of control over condition(s), and more active engagement in their healthcare. Outcomes for CYP included improved self-advocacy and communication. CONCLUSION: Clearer definitions of which young people would benefit from using a PHR must be established to inform which organisations and service providers would be best suited to PHR implementation.
Identifier
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<a href="http://doi.org/10.1111/cch.12652" target="_blank" rel="noreferrer noopener">10.1111/cch.12652</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
Abbott A
April 2019 List
Byrne B
Child: Care
Child: Care, Health and Development
children and young people
Communication
CONTEXT
Diffin J
Evaluation
Health and Development
Implementation
Kerr H
McLaughlin D
O'Halloran P
Personal-health record
Price J
realist review
-
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Title
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February 2019 List
Text
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Citation List Month
February 2019 List
URL Address
<a href="http://doi.org/10.2147/amep.s180526" target="_blank" rel="noreferrer noopener"> http://doi.o
rg/10.2147/amep.s180526</a>
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Title
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Evaluating the impact of national education in pediatric palliative care: the Quality of Care Collaborative Australia
Publisher
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Advances in Medical Education and Practice
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Subject
The topic of the resource
training; confidence; health care; education dosage; evaluation
Creator
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Slater PJ; Herbert AR; Baggio SJ; Donovan LA; McLarty AM; Duffield J A; Pedersen LC; Duc JK; Delaney AM; Johnson SA; Heywood MG; Burr CA
Description
An account of the resource
Purpose: The Quality of Care Collaborative Australia (QuoCCA) provided pediatric palliative care education across Australia with the aim of improving the quality of services. The education was delivered through a collaboration of six tertiary pediatric palliative care services, through funding for Nurse Educators, Medical Fellows, a National Allied Health Educator, and national project staff. Methods: Pre- and post-education surveys were completed by participants immediately following the education, and confidence and knowledge were measured along nine domains related to the care of the child and family, including managing a new referral, symptom management, medications, preparing the family, and using local agencies. Results: Education was provided to over 5,500 health and human service professionals in 337 education sessions across Australia between May 2015 and June 2017. Paired pre- and post-surveys were completed by 969 participants and showed a significant improvement in all the domains measured. Those with no experience in caring for children receiving palliative care showed greater improvement following QuoCCA education compared to those with experience, although the latter had higher scores both before and after education. Similarly, those with no previous education showed greater improvement, but those with previous education showed higher scores overall. Participants in full-day and half-day sessions showed greater improvement than those in short day sessions. Thus, the dosage of education in the length of the sessions and prior attendance impacted knowledge and confidence. Topics requested by the participants were analyzed. Educator learnings were that education was more effective when tailored to the needs of the audience, was interactive, and included story-telling, case studies, and parent experiences. Conclusion: These results encouraged the continuation of the provision of education to novice and experienced professionals who care for children with a life-limiting condition, leading to higher levels of confidence and knowledge. The learnings from this evaluation will be transferred into the second round of funding for the national QuoCCA education project. The next stage will focus on developing simulation and interactive training, accessible training modules, and videos on a national website.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.2147/amep.s180526" target="_blank" rel="noreferrer noopener">10.2147/amep.s180526</a>
2018
Advances in Medical Education and Practice
Baggio SJ
Burr CA
Confidence
Delaney AM
Donovan LA
Duc JK
Duffield J A
education dosage
Evaluation
February 2019 List
Health Care
Herbert AR
Heywood MG
Johnson SA
McLarty AM
Pedersen LC
Slater PJ
Training
-
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/10.1017/S147895151600047X" target="_blank" rel="noreferrer">http://doi.org/10.1017/S147895151600047X</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 scoping review of bereavement service outcomes
Publisher
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Palliative & Supportive Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2016
Subject
The topic of the resource
Outcomes; Literature review; Bereavement services; Evaluation; Grief and mourning
Creator
An entity primarily responsible for making the resource
Wilson DM; Dhanji N; Playfair R; Nayak SS; Puplampu Gideon L; Macleod R
Description
An account of the resource
OBJECTIVE: This scoping literature review, through finding and assessing researched bereavement service outcomes, sought to determine the state of bereavement services evaluation, to catalogue service types, and to identify which service or services, if any, demonstrate clear evidence of effectiveness. METHOD: Our methods included: (1) a literature search for published English-language research articles from 2005-2015; (2) critical appraisal of articles to identify findings; (3) compilation of findings; and (4) determination of the relevance of our findings. RESULTS: Some 38 papers were found, and all were retained to identify the outcomes researched and research findings. Many different outcomes were studied in the 18 quantitative, 11 qualitative, and 9 mixed-methods investigations undertaken worldwide. Ten studies focused on level of grief, six on stress/distress level, six on grief knowledge, six on level of depression, and five on somatization or physical symptoms. Most commonly, a group of bereavement services was evaluated as a whole, followed by group therapy, individual counseling, written information, and other less common services. No group of services or individual service was determined to yield clear and convincing evidence of effectiveness. Regardless, all but one service were shown to have value-most often related to gaining grief information and/or emotional support. Until high-quality research studies have repeatedly revealed evidence of effectiveness, it is possible that the positive outcomes of bereavement services will be largely based on bereaved people receiving helpful educational information and emotional support from organizations and people prepared to help them. SIGNIFICANCE OF RESULTS: This project outlines existing bereavement service types and the state of science in relation to determination of outcomes. It offers suggestions to advance the state of science to validate or refine bereavement services. It brings to light the issue that bereavement service outcomes need to be carefully researched so that evidence can drive service refinement and expansion. It also highlights the importance of effective bereavement services.
2016-06
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1017/S147895151600047X" target="_blank" rel="noreferrer">10.1017/S147895151600047X</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
The nature or genre of the resource
Journal Article
2016
Backlog
Bereavement Services
Dhanji N
Evaluation
Grief and mourning
Journal Article
Literature review
Macleod R
Nayak SS
Outcomes
Palliative & Supportive Care
Playfair R
Puplampu Gideon L
Wilson DM
-
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.
Citation List Month
Backlog
URL Address
<a href="http://search.ebscohost.com.ezproxy.library.ubc.ca/login.aspx?direct=true&db=c8h&AN=2010735421&site=ehost-live" target="_blank" rel="noreferrer">http://search.ebscohost.com.ezproxy.library.ubc.ca/login.aspx?direct=true&db=c8h&AN=2010735421&site=ehost-live</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
An overview of contemporary social work practice in palliative care.
Publisher
An entity responsible for making the resource available
Progress In Palliative Care
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; Male; Palliative Care; Canada; Education; Aged; Social Values; Hospices; Social Work; Patient Advocacy; Role; Research; psychosocial; PPC Book Chapter 2011 (Kim Widger); decision making; knowledge; Support; Adolescence; Collaboration; Evaluation; reflection; Access to Information; 80 and over; Commitment; Communities; Goals and Objectives; Health Care Delivery; Multidisciplinary Care Team; Patient Care Plans
Creator
An entity primarily responsible for making the resource
Cadell S; Johnston M; Bosma H; Wainright W
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
2010
2010
80 And Over
Access To Information
Adolescence
Aged
Backlog
Bosma H
Cadell S
Canada
Collaboration
Commitment
Communities
Decision Making
Education
Evaluation
Female
Goals and Objectives
Health Care Delivery
Hospices
Johnston M
Journal Article
Knowledge
Male
Multidisciplinary Care Team
Palliative Care
Patient Advocacy
Patient Care Plans
PPC Book Chapter 2011 (Kim Widger)
Progress In Palliative Care
psychosocial
Reflection
Research
Role
Social Values
Social Work
Support
Wainright W
-
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.1526-4637.2001.01041.x" target="_blank" rel="noreferrer">http://doi.org/10.1046/j.1526-4637.2001.01041.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
Designing pain research from the patient's perspective: What trial end points are important to patients with chronic pain?
Publisher
An entity responsible for making the resource available
Pain 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
Female; Male; Adult; Aged; Perception; Demography; Human; Sleep; Interview; Evaluation; Chronic Pain/dt [Drug Therapy]; Outcomes Research; Article; Clinical Article; Clinical Study; Controlled Study; Disease Severity; Dose Response; Empiricism; Health Center; Medical Decision Making; Medical Information; Medical Research; Methodology; Opiate/do [Drug Dose]; Opiate/dt [Drug Therapy]; Pain Assessment; Pain Clinic; qualitative analysis; Rating Scale; Urban Area
Creator
An entity primarily responsible for making the resource
Casarett D; Karlawish J; Sankar P; Hirschman K; Asch DA
Description
An account of the resource
Objectives. The goals of this study were to define the endpoints of pain research that are important to patients with chronic pain and to identify clinical and demographic variables that are associated with patients' choices of endpoints. Patients & Setting. Interviews were completed with 40 patients seen at the anesthesia pain clinic of an urban tertiary care medical center. Design. Each patient was presented with 4 brief (3-4 sentences) fixed information vignettes describing studies in which new medications would be evaluated. For each, patients were asked to describe how the medication being studied might offer an improvement over their current therapy. Outcome measures. Measures included structured qualitative analysis of responses, the Brief Pain Inventory, and Global Distress Index of the Memorial Symptom Assessment Scale. Results. Patients described a total of 20 endpoints. Individually, patients cited between 2 and 9 end-points each (mean 4.9, standard deviation 1.7). Of these, the most commonly cited were decrease pain, decrease opioid dose, decrease frequency of scheduled dose, increased ability to function, decrease frequency of breakthrough dose, and improve sleep. Patients with severe pain cited more endpoints than did those with mild or moderate pain (mean 5.5 vs. 4.3; Rank sum test p = 0.01). Conclusions. These data suggest that empirical research can provide data to guide the choice of endpoints in clinical studies of pain interventions.
2001
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1046/j.1526-4637.2001.01041.x" target="_blank" rel="noreferrer">10.1046/j.1526-4637.2001.01041.x</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).
Type
The nature or genre of the resource
Journal Article
2001
Adult
Aged
Article
Asch DA
Backlog
Casarett D
Chronic Pain/dt [Drug Therapy]
Clinical Article
Clinical Study
Controlled Study
Demography
Disease Severity
Dose Response
Empiricism
Evaluation
Female
Health Center
Hirschman K
Human
Interview
Journal Article
Karlawish J
Male
Medical Decision Making
Medical Information
Medical Research
Methodology
Opiate/do [Drug Dose]
Opiate/dt [drug Therapy]
Outcomes Research
Pain Assessment
Pain Clinic
Pain Medicine
Perception
Qualitative Analysis
Rating Scale
Sankar P
Sleep
Urban Area
-
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/10.1080/09581590110066667" target="_blank" rel="noreferrer">http://doi.org/10.1080/09581590110066667</a>
Dublin Core
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Title
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Involving users in evaluation: the social relations of user participation in health research
Publisher
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Critical Public Health
Date
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2001
Subject
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Research; Policy; Evaluation Studies; Health Care; Evaluation; Government Policy; Health Research; Public Policy; Research Evidence; Social Care
Creator
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Truman C; Raine P
Description
An account of the resource
User involvement has become a central tenet of government policy regarding health and social care. Likewise, the role of 'evidence' is seen as being at the heart of effective planning and delivery of health services. (Our Healthier Nation, 1999). This paper examines the role of user involvement in evaluative research within the provision of an evidence base related to practice development. By focusing on the role of participatory research in the creation of an evidence base for healthcare provision, the authors explore the nature and possibilities of user involvement in providing an evidence base within a community mental health service. The paper identifies factors that may facilitate or inhibit user involvement and participation in evaluative research. It is argued that whilst the effective involvement of users may improve the quality and validity of research evidence, user participation in the research process in a meaningful way requires changes in the way that research is commissioned and assessed so that the nature of user involvement may become viable. The authors suggest that the creation of evidence in health research is shaped by the social relations of the research process as well as by the methodologies used.
2001
Identifier
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<a href="http://doi.org/10.1080/09581590110066667" target="_blank" rel="noreferrer">10.1080/09581590110066667</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Type
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Journal Article
2001
Backlog
Critical Public Health
Evaluation
Evaluation Studies
Government Policy
Health Care
Health Research
Journal Article
Policy
Public Policy
Raine P
Research
Research Evidence
Social Care
Truman C
-
Dublin Core
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Title
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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/10.1186/s12904-017-0267-z" target="_blank" rel="noreferrer">http://doi.org/10.1186/s12904-017-0267-z</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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Paediatric palliative care improves patient outcomes and reduces healthcare costs: evaluation of a home-based program
Publisher
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Bmc Palliative Care
Date
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2018
Subject
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Caregiver Burden; Costs; effectiveness; Evaluation; Health-related quality of life; paediatrics; Palliative Care
Creator
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Chong PH; De Castro Molina JA; Teo K; Tan WS
Description
An account of the resource
BACKGROUND: Around the world, different models of paediatric palliative care have responded to the unique needs of children with life shortening conditions. However, research confirming their utility and impact is still lacking. This study compared patient-related outcomes and healthcare expenditures between those who received home-based paediatric palliative care and standard care. The quality of life and caregiver burden for patients receiving home-based paediatric palliative care were also tracked over the first year of enrolment to evaluate the service's longitudinal impact. METHOD: A structured impact and cost evaluation of Singapore-based HCA Hospice Care's Star PALS (Paediatric Advance Life Support) programme was conducted over a three-year period, employing both retrospective and prospective designs with two patient groups. RESULTS: Compared to the control group (n = 67), patients receiving home-based paediatric palliative care (n = 71) spent more time at home than in hospital in the last year of life by 52 days (OR = 52.30, 95% CI: 25.44-79.17) with at least two fewer hospital admissions (OR = 2.46, 95% CI: 0.43-4.48); and were five times more likely to have an advance care plan formulated (OR = 5.51, 95% CI: 1.55-19.67). Medical costs incurred by this group were also considerably lower (by up to 87%). Moreover, both patients' quality of life (in terms of pain and emotion), and caregiver burden showed improvement within the first year of enrolment into the programme. DISCUSSION: Our findings suggest that home-based paediatric palliative care brings improved resource utilization and cost-savings for both patients and healthcare providers. More importantly, the lives of patients and their caregivers have improved, with terminally ill children and their caregivers being able to spend more quality time at home at the final stretch of the disease. CONCLUSIONS: The benefits of a community paediatric palliative care programme have been validated. Study findings can become key drivers when engaging service commissioners or even policy makers in appropriate settings.
Identifier
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<a href="http://doi.org/10.1186/s12904-017-0267-z" target="_blank" rel="noreferrer">10.1186/s12904-017-0267-z</a>
Rights
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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).
2018
BMC Palliative Care
Caregiver Burden
Chong PH
Costs
De Castro Molina JA
Effectiveness
Evaluation
Health-related quality of life
January 2018 List
Paediatrics
Palliative Care
Tan WS
Teo 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
June 2017 List
URL Address
https://www.ahcmedia.com/articles/140404-pediatric-end-of-life-care-an-additional-layer-of-complexity
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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Pediatric End-of-life Care: An 'additional Layer Of Complexity'
Publisher
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Medical Ethics Advisor
Date
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2017
Subject
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Evaluation; Terminal Care
Description
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Ethicists can encourage clinicians to consider language used to communicate with parents and ask about the family’s values to ensure ethical pediatric end-of-life care.
Rights
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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).
2017
Evaluation
June 2017 List
Medical Ethics Advisor
Terminal Care