1 40 12 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 May 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 <a href="https://pedpalascnetlibrary.omeka.net/collections/show/123">May List 2024</a> URL Address <a href="http://doi.org/10.1002/ped4.12422" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1002/ped4.12422</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 Outcomes of critically ill children with pre-existing mental health conditions Publisher An entity responsible for making the resource available Pediatric Investigation Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource Critical Illness; Psychology; Psychiatry; Critical care; Public health Creator An entity primarily responsible for making the resource Krawiec C; Cash M; Ceneviva G; Tian Z; Zhou S; Thomas NJ Description An account of the resource Importance: Critically ill children with pre-existing mental health conditions may have an increased risk of poor health outcomes. Objective: We aimed to evaluate if pre-existing mental health conditions in critically ill pediatric patients would be associated with worse clinical outcomes, compared to children with no documented mental health conditions. Methods: This retrospective observational cohort study utilized the TriNetX electronic health record database of critically ill subjects aged 12–18 years. Data were analyzed for demographics, pre-existing conditions, diagnostic, medication, procedural codes, and mortality. Results: From a dataset of 102 027 critically ill children, we analyzed 1999 subjects (284 [14.2%] with a pre-existing mental health condition and 1715 [85.8%] with no pre-existing mental health condition). Multivariable analysis demonstrated that death within one year was associated with the presence of pre-existing mental health conditions (odds ratio 8.97 [3.48–23.15], P < 0.001), even after controlling for the presence of a complex chronic condition. Interpretation: The present study demonstrates that the presence of pre-existing mental health conditions was associated with higher odds of death within 1 year after receiving critical care. However, the confidence interval was wide and hence, the findings are inconclusive. Future studies with a larger sample size may be necessary to evaluate the true long-term impact of children with pre-existing mental health conditions who require critical care services. © 2024 Chinese Medical Association. Pediatric Investigation published by John Wiley & Sons Australia, Ltd on behalf of Futang Research Center of Pediatric Development. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/ped4.12422" target="_blank" rel="noreferrer noopener">10.1002/ped4.12422</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). 2024 Cash M Ceneviva G Critical Care Critical Illness Krawiec C May List 2024 Pediatric Investigation Psychiatry Psychology Public Health Thomas NJ Tian Z Zhou S 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/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1186/s12904-023-01280-8</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 Balancing pandemic public health restrictions and family support at the end of life: palliative care and bereavement experiences of parents whose child died during the COVID-19 pandemic Publisher An entity responsible for making the resource available BMC Palliative Care 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; Canada; terminal care; article; controlled study; female; human; male; chronic disease; social support; palliative therapy; interview; parental attitude; health care policy; health care access; health service; adolescent; infant; physical activity; public health; qualitative research; coping behavior; coronavirus disease 2019; risk assessment; health status; personal experience; bereavement support; health care facility; family support; pandemic; infection control Creator An entity primarily responsible for making the resource Rapoport A; Nicholas DB; Zulla RT Description An account of the resource Background: Little is known about the impact of the COVID-19 pandemic on families of children with chronic life-limiting conditions who died during the COVID-19 pandemic. Methods: In this qualitative study, parents of a child (< 18 years) who died during the COVID-19 pandemic from an underlying chronic medical condition were interviewed to explore how the pandemic impacted end-of-life care and bereavement experiences. Parents of children followed by the pediatric palliative care service were recruited from a large children's hospital in eastern Canada. Results: Twenty bereaved parents, consisting of 12 mothers and 8 fathers, participated in individual interviews between January and December 2021. Findings identified impacts of the COVID-19 pandemic on children's end-of-life care, experiences in hospital and at home, and family bereavement processes and experiences. Most parents experienced substantial worry about their child's physical status and the additional risk of COVID-19 given her/his vulnerability. Parents also struggled to navigate public health protocols as they attended to their child's needs and their family's desire for engagement and support. Key facilitators that helped families cope included a strong network of formal and informal supports. Conclusion: Implications highlight the need to critically reflect on pandemic care in the context of co-occurring end-of-life processes. Findings amplify the need to balance necessary infection control practices with access to essential supports for families. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12904-023-01280-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-023-01280-8</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2023 Adolescent Article Bereavement Support BMC Palliative Care Canada Child Chronic Disease Controlled Study Coping Behavior coronavirus disease 2019 family support February List 2024 Female Health Care Access health care facility Health Care Policy Health Service Health Status Human Infant Infection Control Interview Male Nicholas DB Palliative Therapy Pandemic Parental Attitude Personal Experience physical activity Public Health Qualitative Research Rapoport A Risk Assessment Social Support Terminal Care Zulla RT Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource 2023 Special Edition 5 - Low Resource Setting List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month 2023 SE5 - Low Resource Setting URL Address <a href="http://doi.org/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3389/fonc.2023.1112788</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource The burden and scope of childhood cancer in displaced patients in Jordan: The King Hussein Cancer Center and Foundation Experience Publisher An entity responsible for making the resource available Frontiers in Oncology 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; Neoplasms; childhood cancer; article; female; human; major clinical study; male; social support; palliative therapy; health care cost; follow up; retinoblastoma; cancer patient; overall survival; cancer registry; leukemia; brain tumor; cancer center; refugee; lymphoma; bone sarcoma; Jordanian; public health; Jordan; drug cost; Foundations; Iraqi; Syrian; Yemeni Creator An entity primarily responsible for making the resource Rihani R; Jeha S; Nababteh M; Rodriguez-Galindo C; Mansour A; Sultan I Description An account of the resource Introduction: Jordan hosts one of the highest numbers of refugees per capita in the world, with the Syrian crisis leading to an influx of displaced persons to the already vulnerable population. However, limited resources and a lack of cancer-care strategies have made it difficult for refugees in Jordan to access quality cancer care. The King Hussein Cancer Center (KHCC) and Foundation (KHCF) have played a pivotal role in providing financial and medical support for displaced children with cancer, treating 968 non-Jordanian children with cancer between 2011-2022, with a median age of 6 years. Of these, 84% were fully funded by KHCF, and nationalities included Syrians (29%), Palestinians (26%), Iraqis (23%), and Yemenis (17%). Cancer diagnoses included solid tumors (44%), leukemia (23%), lymphoma (13%), bone sarcomas (9.5%), and retinoblastoma (9.1%). The median cost of treatment was JOD 18,000 (USD 25,352), with a total estimated cost of JOD 23.8 million (USD 33.5 million). More recently, in partnership with St. Jude Children's Research Hospital (SJCRH), two successive humanitarian funds (HF) were established to optimize cancer care for displaced children in Jordan. Results: Between February 2018 and September 2022, 51 children were fully treated on KHCC-SJCRH-HF, with a median age of 6 years and nationalities including Syrians (80%), Iraqis (6%), and Yemenis (8%). The most common cancer diagnoses were leukemia (41%), lymphoma (25%), solid tumors (24%), retinoblastoma (6%), and brain tumors (4%). Of these, 94% are alive and 51% are still receiving coverage. The median coverage for patients was JOD 21,808 (USD 30,715), and the total cost of treatment on KHCC/KHCF-SJCRH/American Lebanese Syrian-Associated Charities HF1 and HF2 was JOD 1.44 million (USD 1.97 million) and JOD 1.18 million (USD 1.67 million), respectively. Conclusion: This experience highlights the high burden of displaced children with cancer in Jordan, and the importance of local foundations like KHCC/KHCF and partnerships with international partners like SJCRH in providing lifesaving humanitarian initiatives and quality cancer care. Innovative cancer-care delivery models and sustainable financing are essential to ensure continuous coverage and access to cancer care for displaced persons in Jordan. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3389/fonc.2023.1112788" target="_blank" rel="noreferrer noopener">10.3389/fonc.2023.1112788</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 2023 SE5 - Low Resource Setting Article bone sarcoma Brain Tumor cancer center Cancer Patient Cancer Registry Child Childhood Cancer drug cost Female Follow Up Foundations Frontiers in Oncology Health Care Cost Human Iraqi Jeha S Jordan Jordanian Leukemia Lymphoma Major Clinical Study Male Mansour A Nababteh M Neoplasms Overall Survival Palliative Therapy Public Health refugee retinoblastoma Rihani R Rodriguez-Galindo C Social Support Sultan I Syrian Yemeni 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 July 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 July List 2023 URL Address <a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener"> http://doi.org/10.3390/children9030322</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 "It Is a Whole Different Life from the Life I Used to Live": Assessing Parents' Support Needs in Paediatric Palliative Care Publisher An entity responsible for making the resource available Children Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource caregiver support; palliative therapy; parent; pediatric patient; adult; article; Australia; clinical monitoring; controlled study; emotion; emotional support; empowerment; family support; feasibility study; female; hospice care; human; male; Palliative Care; psychosocial care; public health; qualitative research; terminal care; tertiary care center; thematic analysis; volunteer Creator An entity primarily responsible for making the resource Aoun SM; Stegmann R; Deleuil R; Momber S; Cuddeford L; Phillips MB; Lyon ME; Gill FJ Description An account of the resource Aims: This feasibility study aimed to systematically identify and address the support needs of parents of children with life-limiting illnesses and to assess whether the systematic approach was acceptable and relevant to parents. Method(s): The CSNAT (Paediatric) intervention consisted of two assessment visits with the paediatric palliative care team, 2-8 weeks apart, comprising conversations about sources for support in a tertiary children hospital in Western Australia (2018-2019). Audio-recorded telephone interviews were conducted with parents, and inductive thematic analysis was undertaken. Result(s): All 28 parents who were involved in the intervention agreed to be interviewed. Five themes summarised their experience: caregiving challenges, perceived gaps and feelings of isolation; the usefulness and practicality of the systematic assessment; emotional responses to self-reflection; feelings of validation and empowerment; and received supports responsive to their needs. Conclusion(s): Parents appreciated the value of this systematic approach in engaging them in conversations about their needs and solutions to address them. While clinical service support was affirmed by parents, they were left wanting in other areas of practical, psychosocial, and emotional support. Palliative care services need to build stronger partnerships with supportive community networks through compassionate communities volunteer models of care to address the non-clinical needs of these families.Copyright © 2022 by the authors. Licensee MDPI, Basel, Switzerland. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3390/children9030322" target="_blank" rel="noreferrer noopener">10.3390/children9030322</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 Adult Aoun SM Article Australia Caregiver Support Children clinical monitoring Controlled Study Cuddeford L Deleuil R Emotion emotional support empowerment family support Feasibility Study Female Gill FJ Hospice Care Human July List 2023 Lyon ME Male Momber S Palliative Care Palliative Therapy Parent pediatric patient Phillips MB psychosocial care Public Health Qualitative Research Stegmann R Terminal Care tertiary care center Thematic Analysis Volunteer 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 2022 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 2022 List URL Address <a href="http://doi.org/10.3390/children8110973" target="_blank" rel="noreferrer noopener">http://doi.org/​10.3390/children8110973</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 Utilization of Parallel Resources and Sociodemographic Factors in Treating Children with Complex Chronic Diseases: A Cross-Sectional Study Publisher An entity responsible for making the resource available Children Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource pediatric; social support; public health; psychosocial support systems; child health services; socioeconomic factors; complex chronic care; multiple chronic conditions; alternative therapies Creator An entity primarily responsible for making the resource Pérez-Ardanaz B; Peláez-Cantero MJ; González-Cano-Caballero M; Gutiérrez-Rodríguez L; Gómez-González AJ; Lupiáñez-Pérez I; Morales-Asencio JM; Canca-Sánchez JC Description An account of the resource Children with complex chronic conditions have a high need for health and social care resources. Many parents explore parallel resources such as alternative therapies, associations, psychological support, private medical consultations, and other out-of-pocket expenses for healthcare. The use of these alternative health resources is sometimes unclear and may lead to health inequalities. To characterize the use made of alternative healthcare resources for children with complex chronic conditions. Additionally, we evaluate the influence of sociodemographic factors on the distribution of this utilization of resources; (2) Methods: Cross-sectional study. Children with complex chronic diseases were treated at a tertiary hospital in Granada, Spain in 2016. We analyzed their use of healthcare resources and socioeconomic variables. This research complies with STROBE guidelines for observational studies; (3) Results: In total, 265 children were analyzed (mean age 7.3 years, SD 4.63). A total of 105 children (39.6%) attended private consultations with specialists, and 12.1% (n = 32) of the children had additional private health insurance. One out three parents belonged to a mutual support association (n = 78), and 26% (n = 69) of the children used alternative therapies. Furthermore, 75.4% (n = 199) of the children received no psychological support. Children whose parents had a higher educational level and occupations status made greater use of parallel healthcare resources.; (4) Conclusions: A significant proportion of children used multiple health resources in addition to the public healthcare system depending on sociodemographic determinants. Studies are needed to determine whether the use of these alternative services achieves better levels of health. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.3390/children8110973" target="_blank" rel="noreferrer noopener">10.3390/children8110973</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). 2021 Alternative Therapies Canca-Sánchez JC Child Health Services Children complex chronic care Gómez-González AJ González-Cano-Caballero M Gutiérrez-Rodríguez L January 2022 List Lupiáñez-Pérez I Morales-Asencio JM Multiple Chronic Conditions Pediatric Peláez-Cantero MJ Pérez-Ardanaz B Psychosocial Support Systems Public Health Social Support Socioeconomic Factors 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 2019 Oncology 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 Oncology 2019 List URL Address <a href="http://doi.org/10.1002/pbc.28013" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1002/pbc.28013</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Palliative care utilization in hospitalized children with cancer Publisher An entity responsible for making the resource available Pediatric Blood and Cancer Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource aged; article; brain cancer; cancer model; child; Childhood cancer; cohort analysis; controlled study; female; hospital admission; hospital cost; hospital mortality; hospitalization; hospitalized child; human; human tissue; length of stay; major clinical study; male; mortality risk; palliative therapy; physician; public health; resource allocation Creator An entity primarily responsible for making the resource Cheng B T; Wangmo T Description An account of the resource Background: There is growing evidence that palliative care (PC) is associated with increased quality of life in children with cancer. Despite increasing recommendations in support of PC to improve pediatric oncology care, little is known about its patterns of use. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1002/pbc.28013" target="_blank" rel="noreferrer noopener">10.1002/pbc.28013</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). 2020 Aged Article brain cancer cancer model Cheng B T Child Childhood Cancer Cohort Analysis Controlled Study Female Hospital Admission hospital cost Hospital Mortality Hospitalization Hospitalized Child Human Human Tissue Length Of Stay Major Clinical Study Male mortality risk Oncology 2019 List Palliative Therapy Pediatric Blood and Cancer Physician Public Health Resource Allocation Wangmo 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 A name given to the resource 2019 Developing World 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 Developing World 2019 List URL Address <a href="http://doi.org/10.1080/09699260.2019.1646033" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1080/09699260.2019.1646033</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 Integrating palliative care to improve the care of children living with HIV in Indonesia 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 2019 Subject The topic of the resource article; child; Children; HIV care; hiv/aids; human; Human immunodeficiency virus; Human immunodeficiency virus infected patient; Indonesia; nonhuman; Palliative care; palliative therapy; Pediatric; public health; quality of life; Quality of life; Rural; scale up; world health organization Creator An entity primarily responsible for making the resource Limardi S; Saunders R; Tasia Y; Hong P W Description An account of the resource There is a significant gap in the provision of palliative care for children living with HIV (CLHIV) in Indonesia. While Indonesia has one of the highest rates of HIV infection amongst children in Asia, there is limited availability and access to palliative care services for CLHIV, especially for those living in rural areas. This paper highlights the need to scale up the provision of pediatric palliative care services for CLHIV in the country through the integration of palliative care into existing HIV care. This integration would not only increase the accessibility of palliative care for CLHIV, but also improve the quality of HIV care by addressing and meeting individual needs, enhancing retention in HIV care and improving quality of life amongst CLHIV. An effective integration of palliative care may be achieved by adopting World Health Organization's Public Health Strategy for Palliative Care, with adaptations made to accommodate the unique geographical and cultural contexts of Indonesia. Copyright _ 2019, _ 2019 Informa UK Limited, trading as Taylor & Francis Group. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1080/09699260.2019.1646033" target="_blank" rel="noreferrer noopener">10.1080/09699260.2019.1646033</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). 2019 Article Child Children Developing World 2019 List HIV care hiv/aids Hong P W Human Human Immunodeficiency Virus Human immunodeficiency virus infected patient Indonesia Limardi S Nonhuman Palliative Care Palliative Therapy Pediatric Progress In Palliative Care Public Health Quality Of Life Rural Saunders R scale up Tasia Y World Health Organization 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 2020 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 2020 List URL Address <a href="http://doi.org/10.1136/bmjspcare-2015-001092" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1136/bmjspcare-2015-001092</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 Integrating palliative care into the community: the role of hospices and schools 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 2019 Subject The topic of the resource article; bereavement support; capacity building; child; curriculum; female; hospice care; human; human experiment; male; palliative therapy; primary school; public health; Scotland Creator An entity primarily responsible for making the resource Paul S; Cree V E; Murray S A Description An account of the resource OBJECTIVES: Palliative care services have, up to now, paid insufficient attention to social aspects of dying and bereavement and this has affected how patients and their families experience end of life and bereavement within their communities. New public health approaches to palliative care offer a different way forward by seeking to develop communities that support death and bereavement. Such approaches are now a priority for the majority of hospices in the UK and work with schools has been identified as a key area of work. Practice that engages schools and children on issues concerning end-of-life care is, however, underdeveloped and underdocumented. This research explored the role of hospices in working with schools to promote education and support around end-of-life and bereavement experiences. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/bmjspcare-2015-001092" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2015-001092</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). 2019 Article Bereavement Support BMJ Supportive & Palliative Care capacity building Child Cree V E Curriculum February 2020 List Female Hospice Care Human Human Experiment Male Murray S A Palliative Therapy Paul S Primary School Public Health Scotland 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 2020 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 2020 List URL Address <a href="http://doi.org/10.1016/j.socscimed.2019.112522" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.socscimed.2019.112522</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 Mortality in parents after the death of a child Publisher An entity responsible for making the resource available Social Science & Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource Attitude to Death; Bereavement; Child Mortality; Genetics; Heart Diseases -- Mortality; Human; Life Expectancy; Middle Age; Mortality -- Risk Factors; Parental Attitudes; Peer Group; Public Health; Twins; United States Creator An entity primarily responsible for making the resource Song J; Mailick M R; Greenberg J S; Floyd F J Description An account of the resource The death of a child is a traumatic stressor that takes a toll on the health of parents. This study examined long-term impacts of the death of a child on the risk of early mortality in bereaved parents. In a follow-up analysis, a twin subsample was analyzed to examine potential genetic confounding. We analyzed data from the Midlife in the United States (MIDUS) study. The primary sample consists of two groups of MIDUS 2 participants (2004–06); (1) parents who experienced the death of a child prior to MIDUS 2 (n = 451) and (2) comparison parents who had not experienced death of any children (n = 1804) (mean age = 63). We also analyzed 52 twin pairs in which one twin experienced the death of a child and 271 twin pairs in which both twins had all living children. Mortality status of parents was assessed in 2017. Parents who had experienced the death of a child had a 32% higher likelihood of early mortality (defined as dying earlier than life expectancy) than their peers who did not have any deceased children, and they were more likely to die of heart disease. Analyses of the twin subsample revealed significantly lower concordance for early mortality among the pairs with a bereaved twin than among control twins, consistent with non-genetic effects. The findings suggest that the death of a child has lasting impacts on the risk of early mortality in bereaved parents. This study provides the first U.S. estimate of bereavement effects on mortality extending through the parents' full life course, with significant public health implications. In addition, analysis of concordance of early death rates in the twin subsample suggests the impact on mortality of parental bereavement, net of genetic factors. • 32% higher rate of mortality in bereaved parents than non-bereaved parents. • Parental mortality effect confirmed in twin sample. • Highest death rates from heart disease in bereaved parents. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.socscimed.2019.112522" target="_blank" rel="noreferrer noopener">10.1016/j.socscimed.2019.112522</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). 2019 Attitude To Death Bereavement Child Mortality Floyd F J Genetics Greenberg J S Heart Diseases -- Mortality Human January 2020 List Life Expectancy Mailick M R Middle Age Mortality -- Risk Factors Parental Attitudes Peer Group Public Health Social science & medicine Song J Twins United States 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 June 2018 List 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). 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 2018 List URL Address <a href="http://doi.org/10.1136/archdischild-2018-rcpch.488" target="_blank" rel="noreferrer noopener">http://doi.org/10.1136/archdischild-2018-rcpch.488</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 Influencing the national debate on medical assistance in dying (MAID): Leveraging the canadian paediatric surveillance system (CPSP) to inform the position of the canadian paediatric society (CPS) 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 2018 Subject The topic of the resource medical care; adult; Canada; Canadian; child; complication; conference abstract; conversation; death; disability; female; human; joint; law; major clinical study; male; morbidity; palliative therapy; pediatrician; public figure; public health; rare disease; young adult Creator An entity primarily responsible for making the resource Moore-Hepburn C Description An account of the resource Aims In June 2016, Bill C-14 was enacted in the Canadian Parliament, allowing medical assistance in dying (MAID) for consenting adults with 'grievous and irremediable medical conditions' experiencing 'intolerable' suffering whose deaths are 'reasonably foreseeable'. Minor patients (both mature and 'never competent' minors) are currently excluded from the legislation. An independent review of the issue of minor patients and MAID was requested by Parliament. As health professionals, politicians and the public grappled with this issue, never before formally contemplated in Canada, the Canadian Paediatric Surveillance Program (CPSP) sough to provide data on exploratory conversations and explicit requests for MAID from/for minor patients to inform the independent review. Methods The CPSP is a joint program of the Public Health Agency of Canada and the Canadian Paediatric Society. The program conducts national surveillance into diseases that are high in disability, morbidity and economic costs to society, despite their low frequency. The CPSP surveys over 2500 paediatricians and paediatric subspecialists each month to monitor rare diseases, conditions and complications in Canadian children. A one-time survey was sent to all CPSP participants in May 2016. The survey tool can be accessed at www.cpsp.cps.ca/surveillance. Results The survey response rate was 40%. Over one-third of participants reported they provide end-of-life or palliative care (370; 35%). Exploratory discussions with minor patients about MAID were reported by 35 participants, representing 60 patients, the majority of whom were 14-18 years of age. Nine (9) partici-pants recalled an explicit request for MAID, representing 17 minors. Exploratory discussions with patients about MAID, on behalf of minor patients, were reported by 118 participants, representing 419 minor patients, the majority of whom were under 1 year of age. Forty-five (45) participants recalled an explicit request for MAID, representing 91 parents, the majority of whom had children under 1 year. Conclusion CPSP participants from across Canada reported exploratory conversations about and explicit requests for MAID from both minors and parents. Discussion with and explicit requests from parents outnumber those by minors by more than five to one. This study represents an important and innovative use of a paediatric surveillance system to inform a national conversation on a complex emerging ethical issue. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1136/archdischild-2018-rcpch.488" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2018-rcpch.488</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 Adult Archives of Disease in Childhood Canada Canadian Child Complication conference abstract Conversation Death Disability Female Human joint June 2018 List Law Major Clinical Study Male Medical Care Moore-Hepburn C Morbidity Palliative Therapy Pediatrician public figure Public Health Rare Disease Young Adult Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1186/1472-684X-12-43" target="_blank" rel="noreferrer">http://doi.org/10.1186/1472-684X-12-43</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 care: development and pilot study of a 'Directory' of life-limiting conditions Publisher An entity responsible for making the resource available Bmc Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2013 Subject The topic of the resource Palliative Care; Public Health; Epidemiology; symptom control; Trajectory Creator An entity primarily responsible for making the resource Hain R; Devins M; Hastings R; Noyes J Description An account of the resource BACKGROUND: Children's palliative care services are developing. Rational service development requires sound epidemiological data that are difficult to obtain owing to ambiguity in the definitions both of the population who needs palliative care and of palliative care itself. Existing definitions are of trajectory archetypes. The aim of this study was to develop and pilot a directory of the commonest specific diagnoses that map on to those archetypes. METHODS: The diagnoses of patients under the care of five children hospices and a tertiary specialist palliative medicine service in the UK were recorded. Duplicates and diagnoses that were not life-limiting conditions according to the ACT/RCPCH criteria or were not primary were removed. The resulting Directory of life-limiting conditions was piloted by analysing Death Certificate data of children in Wales between 2002 and 2007. RESULTS: 1590 diagnoses from children's hospices and 105 from specialist palliative medicine were combined. After removals there were 376 diagnostic label. All ICD10 chapter headings were represented by at least one condition. The pilot study showed that 569 (54%) deaths in Wales were caused by LLC. Only four LLC resulted in ten or more deaths. Among deaths from LLC, the ten commonest diagnoses accounted for 32%, while the 136 diagnoses that caused one or two deaths accounted for 25%. The majority occurred from a small number of life-limiting conditions. CONCLUSION: The Directory is a practical tool for identifying most life-limiting conditions using ICD10 codes that facilitates extraction and analysis of data from existing sources in respect of life-limiting conditions in children such as death certificate data, offering the potential for rapid and precise studies in paediatric palliative care. 2013 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/1472-684X-12-43" target="_blank" rel="noreferrer">10.1186/1472-684X-12-43</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2013 Backlog BMC Palliative Care Devins M Epidemiology Hain R Hastings R Journal Article Noyes J Palliative Care Public Health Symptom Control Trajectory Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1177/1090198109342084" target="_blank" rel="noreferrer">http://doi.org/10.1177/1090198109342084</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 Photovoice: a review of the literature in health and public health Publisher An entity responsible for making the resource available Health Education & Behavior Date A point or period of time associated with an event in the lifecycle of the resource 2010 Subject The topic of the resource Humans; Health Policy; Health Education; Consumer Participation; Community Health Services; Public Health; Outcome and Process Assessment (Health Care); Photography; health promotion; Community-Based Participatory Research Creator An entity primarily responsible for making the resource Catalani C; Minkler M Description An account of the resource Although a growing number of projects have been implemented using the community-based participatory research method known as photovoice, no known systematic review of the literature on this approach has been conducted to date. This review draws on the peer-reviewed literature on photovoice in public health and related disciplines conducted before January 2008 to determine (a) what defines the photovoice process, (b) the outcomes associated with photovoice, and (c) how the level of community participation is related to photovoice processes and outcomes. In all, 37 unduplicated articles were identified and reviewed using a descriptive coding scheme and Viswanathan et al.'s quality of participation tool. Findings reveal no relationship between group size and quality of participation but a direct relationship between the latter and project duration as well as with getting to action. More participatory projects also were associated with long-standing relationships between the community and outside researcher partners and an intensive training component. Although vague descriptions of project evaluation practices and a lack of consistent reporting precluded hard conclusions, 60% of projects reported an action component. Particularly among highly participatory projects, photovoice appears to contribute to an enhanced understanding of community assets and needs and to empowerment. 2010 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/1090198109342084" target="_blank" rel="noreferrer">10.1177/1090198109342084</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2010 Backlog Catalani C Community Health Services Community-Based Participatory Research Consumer Participation Health Education Health Education & Behavior Health Policy Health Promotion Humans Journal Article Minkler M Outcome And Process Assessment (health Care) Photography Public Health