1 40 26 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 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 June List 2024 URL Address <a href="http://doi.org/10.1017/s1478951524000609" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1017/s1478951524000609</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 Meta-synthesis of ethnic minority families' experiences of children's palliative care across developed countries Publisher An entity responsible for making the resource available Palliative and Supportive Care Date A point or period of time associated with an event in the lifecycle of the resource 2024 Subject The topic of the resource pediatric; families; Experiences; children’s palliative care; ethnic minority Creator An entity primarily responsible for making the resource Iluno AC; Tatterton MJ; Haith-Cooper M Description An account of the resource OBJECTIVES: Meeting the needs of people accessing healthcare from ethnic minority (EM) groups is of great importance. An insight into their experience is needed to improve healthcare providers' ability to align their support with the perspectives and needs of families. This review provides insight into how families from EM backgrounds experience children's palliative care (CPC) by answering the question, "What are the experiences of EM families of children's palliative care across developed countries?" METHODS: A systematic search of articles from 6 databases (Scopus, Medline, Web of Science, APA PsycINFO, CINAHL, and Global Health) with no limit to the date of publication. The search was conducted twice, first in June 2022 and again in December 2022. The extracted data were analyzed using thematic synthesis. RESULTS: Eight studies explored the experiences of families of EM in different high-income countries. Four themes were identified: unmet needs leading to communication gaps, accessibility of hospital services and resources, the attitude of healthcare workers, and the need for survival as an immigrant. SIGNIFICANCE OF RESULTS: Overall, the study shows EM families rely heavily on healthcare professionals' cultural competence in delivering palliative care for their children. There is an interplay between EM families' culture, spiritual ties, communication, and social needs from this review. Understanding how to bridge the communication gap and how families use their culture, faith, and spirituality to manage their pain, and grief and improve their quality of life would be extremely beneficial for healthcare practitioners in increasing their support to EM families accessing CPC. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1017/s1478951524000609" target="_blank" rel="noreferrer noopener">10.1017/s1478951524000609</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 Children’s palliative care ethnic minority Experiences Families Haith-Cooper M Iluno AC June List 2024 Palliative And Supportive Care Pediatric Tatterton MJ 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 September 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 September List 2023 URL Address <a href="http://doi.org/10.1177/08258597231189152" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/08258597231189152</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 Power and Potential of Photography as a Therapeutic Modality for Children with Life-Impacting Illnesses Publisher An entity responsible for making the resource available Journal of 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; pediatrics; Photography; Only Child; therapy; families; photography; art; photographs Creator An entity primarily responsible for making the resource Henrich M; Henrich K Description An account of the resource Objectives: Art is being increasingly appreciated for its healing capacity in pediatric medicine. However, while mediums like music and painting have already been widely integrated into children's health institutions across the nation, photography is an artform that is greatly understudied in its application to medicine. As a non-profit organization with a 17-year history of providing free in-hospital/in-hospice photography sessions to the families of children with life-impacting illnesses, we set out to evaluate the therapeutic capacity of this intervention. Methods: Individuals having received Moment by Moment Photography's services from June 2022 to January 2023 were invited to complete a five-question survey assessing the nature and quality of their photography session and the resulting photographs they received. Results: All but one of the 177 participants found the photographs impactful, and the overwhelming majority (95.5%) of participants rated the value of the photographs as high as possible (5/5 on a Likert scale). Further, a dozen themes, including love, share, connect, and fight, among others, were identified that articulate the diversity of ways that "impact" manifested in families. Conclusion: Together, these results clearly support the benefit of photography as a legacy making and therapeutic medium. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/08258597231189152" target="_blank" rel="noreferrer noopener">10.1177/08258597231189152</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 Art Child Families Henrich K Henrich M Journal Of Palliative Care Only Child Pediatrics photographs Photography September List 2040 Therapy 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 2 - Parent Perspectives 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 2031 SE2 - Parent Perspectives URL Address <a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/jpepsy/jsw053</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 Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems Publisher An entity responsible for making the resource available Journal of Pediatric Psychology Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Behavior Problems; child behavior problems; Chronic Illness; complex chronic conditions; families; Family; Palliative Care; pediatric palliative care; Pediatrics; posttraumatic growth; Posttraumatic Growth; siblings; Siblings Creator An entity primarily responsible for making the resource Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H Description An account of the resource Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. (PsycINFO Database Record (c) 2017 APA, all rights reserved) Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsw053</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2017 2031 SE2 - Parent Perspectives Andrews GS behavior problems Cadell S Child Behavior Problems Chronic Illness Complex Chronic Conditions DeLongis A Families Family Journal of Pediatric Psychology Palliative Care Pediatric Palliative Care Pediatrics Posttraumatic Growth Siblings Siden H Steele R Stephenson E 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 2 - Parent Perspectives 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 2024 SE2 - Parent Perspectives URL Address <a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/07481187.2017.1334009</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 Siblings’ voices: A prospective investigation of experiences with a dying child Publisher An entity responsible for making the resource available Death Studies Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource Death and Dying; dying child; families; Family; Hospitals; life experiences; Life Experiences; peers; Peers; siblings; Siblings Creator An entity primarily responsible for making the resource Eaton RC; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M Description An account of the resource Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal, qualitative study over 2 years using interpretive descriptive methodology to understand siblings’ perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience. (PsycINFO Database Record (c) 2019 APA, all rights reserved) Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1334009</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 2024 SE2 - Parent Perspectives Barrera M Beaune L Cadell S Death and Dying Death studies dying child Eaton RC Families Family Hospitals Life Experiences Neville A peers Rapoport A Rugg M Siblings Steele R Widger K Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource October 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 October 2022 List URL Address <a href="http://doi.org/10.1016/j.pedn.2022.07.002">http://doi.org/10.1016/j.pedn.2022.07.002</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 Investigation into Hope, Self-Efficacy, Distress and Uncertainty in Parents Who Have A Child with A Life-Threatening or Life-Limiting Illness Publisher An entity responsible for making the resource available Journal of Pediatric Nursing Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource Children; Families; Hope; Life-limiting illness; Life-threatening illness; Self-efficacy; article; care; behavior; caregiver; child; controlled study; demographics; distress; syndrome; exploratory; research; financial management; human; parental leave; pediatric; nurse; quantitative analysis; self concept; uncertainty Creator An entity primarily responsible for making the resource Spurr S; Bally J; Burles M; McHaro K Description An account of the resource PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations with respect to demographic characteristics. DESIGN AND METHODS: Data for this analysis are derived from a quasi-experimental evaluation of a support intervention with a purposeful sample of parental caregivers from a western Canadian province. Participants completed a demographic survey and four quantitative measures at baseline and following use of the support intervention. RESULT(S): Many parents had high scores of hope and self-efficacy, with highest levels of hope amongst parents who could stay at home with their children, and higher self-efficacy expressed by parents without financial concerns. Increased levels of uncertainty and distress were found amongst parents without other children living in the home, and those with financial concerns, respectively. CONCLUSION(S): This exploratory analysis found that many parents experienced clinically significant distress along with uncertainty. The results determined that caring for children in the home other than the ill child significantly decreased uncertainty. High levels of parental hope and self-efficacy were frequently identified, with variations reflecting differences in social roles and stressors. The results contribute to an increased understanding of the value of support resources including parental leave and financial support. PRACTICE IMPLICATIONS: Pediatric nurses may consider adopting an approach to caring for families with children in treatment for LLIs/LTIs that gives high priority to promoting hope and self-efficacy while ensuring access to support resources. Copyright © 2022 Elsevier Inc. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.pedn.2022.07.002">10.1016/j.pedn.2022.07.002</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 Article Bally J Behavior Burles M CARE Caregiver Child Children Controlled Study Demographics Distress exploratory Families financial management Hope Human Journal of Pediatric Nursing life-limiting illness Life-threatening illness McHaro K Nurse October 2022 List parental leave Pediatric quantitative analysis Research Self Concept Self-efficacy Spurr S Syndrome Uncertainty 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 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 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> 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 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 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 2022 Subject The topic of the resource Children; End-of-life care; Evaluation; Families; Home-based Creator An entity primarily responsible for making the resource 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 An unambiguous reference to the resource within a given context <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 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 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 April 2022 List URL Address <a href="http://doi.org/10.1186/s12913-022-07617-y" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1186/s12913-022-07617-y</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Terminology and descriptions of navigation and related practices for children with neurodisability and their families: a scoping review Publisher An entity responsible for making the resource available BMC Health Services Research Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource Terminology; Descriptions; Neurodisability; Families; Children; Scoping review Creator An entity primarily responsible for making the resource Gardiner E; Wong V; Lin G; Miller AR Description An account of the resource Children with neurodisability (ND) represent a significant population with a demonstrated need for coordinated support. Patient navigation has a primary focus on: facilitating access to and connection amongst fragmented systems; as well as the provision of educational and emotional support. Given the distinct needs of children with ND and their families, programs built upon such core concepts could be of great benefit. The diversity of terminology encompassing navigation-related concepts and activities (e.g., care coordination, case management, family support), however, presents challenges to both practice and research. This scoping review examined the terminology and descriptions provided within published articles on navigation-type models for children with ND and their families. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1186/s12913-022-07617-y" target="_blank" rel="noreferrer noopener">10.1186/s12913-022-07617-y</a> 2022 April 2022 List BMC Health Services Research Children Descriptions Families Gardiner E Lin G Miller AR Neurodisability Scoping review Terminology Wong V Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 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 April 2022 List URL Address <a href="http://doi.org/10.7748/ncyp.2022.e1412" target="_blank" rel="noreferrer noopener">http://doi.org/​10.7748/ncyp.2022.e1412</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 Care after death in children's hospices: recommendations for moving and handling, and for managing physiological deterioration Publisher An entity responsible for making the resource available Nursing Children and Young People Date A point or period of time associated with an event in the lifecycle of the resource 2022 Subject The topic of the resource Bereavement; Death; End-of-life; Families; Grief; Palliative care; Professional handling; Terminal care Creator An entity primarily responsible for making the resource Tatterton M; Honour A; Billington D; Kirkby L; Lyon JA; Lyon N; Gaskin J Description An account of the resource BACKGROUND: Children's hospices provide a range of services for babies, children and young people who have a life-limiting or life-threatening condition, including care after death in specialist 'cool bedrooms'. Care after death is a challenging but important element of hospice care. AIM: The aims of the study were to identify the practices of staff providing care after death in UK children's hospices, notably their moving and handling practices and their management of physiological deterioration, and to produce recommendations that promote safe and consistent practice in moving and handling and in managing physiological deterioration after death in UK children's hospices. METHOD(S): An electronic survey was sent to all 54 UK children's hospices. Free-text responses were analysed using deductive content analysis and used to add depth to the quantitative findings. FINDINGS: Out of 54 children's hospices, 33 responded to the survey. There were great variations in the way hospices delivered care after death, notably in length of stay, interventions and equipment. The lack of consistent practice grounded in evidence-based policy and training may mean that some staff experience higher levels of stress and anxiety than others and that some staff take risks when providing care after death, particularly to express empathy towards bereaved families. CONCLUSION(S): Recommendations are made about moving and handling a child's body after death and managing its physiological deterioration. Hospices can use these recommendations to develop policy and training, standardise what is expected of staff and support practitioners in adequately caring for children after death. Copyright © 2022 RCN Publishing Company Ltd. All rights reserved. Not to be copied, transmitted or recorded in any way, in whole or part, without prior permission of the publishers. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.7748/ncyp.2022.e1412" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2022.e1412</a> 2022 April 2022 List Bereavement Billington D Death end-of-life Families Gaskin J Grief Honour A Kirkby L Lyon JA Lyon N Nursing Children and Young People Palliative Care Professional handling Tatterton M Terminal Care Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource May 2021 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 May 2021 List URL Address <a href="http://doi.org/10.7748/ncyp.2021.e1331" target="_blank" rel="noreferrer noopener">http://doi.org/​10.7748/ncyp.2021.e1331</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 Implementing music therapy in a Norwegian neonatal intensive care unit Publisher An entity responsible for making the resource available Nursing Children and Young People Date A point or period of time associated with an event in the lifecycle of the resource 2021 Subject The topic of the resource clinical; neonatal; intensive care; child health; critical care; medicines; infants; research; families; patients; child development; parents; music therapy; professional; complementary therapies; maternal bonding Creator An entity primarily responsible for making the resource Janner C; Söderström Gaden T; Nakstad B; Solevåg AL Description An account of the resource BACKGROUND: Neonatal intensive care unit (NICU) music therapy is an emerging discipline. There is a growing evidence base supporting its use, with an emphasis on the immediate and short-term positive effects on infants' physiological responses and parents' experiences. AIM: To explore the implementation of music therapy aligned with standards of neonatal care and as an integral part of the care routinely provided in a Norwegian NICU. METHOD: Parents of infants hospitalised in the NICU were offered music therapy sessions based on the First Sounds: Rhythm, Breath and Lullaby model. Before discharge from the NICU, parents were asked to complete an electronic survey about their experiences of music therapy. Nurses' feedback and observations were also elicited and collected. FINDINGS: A total of 16 parents completed the survey. Overall, their experiences of music therapy were positive, and they noted several benefits for themselves and their infant. In addition, nurses observed that parents' interactions with their infant increased after participation in music therapy. However, nurses reported it was challenging to invite parents to participate in music therapy at a time of uncertainty, anxiety and grief. Nurses also found it challenging to disseminate information about music therapy to parents from other cultures. Furthermore, it was identified that most parents learned about the music therapy sessions from the music therapist, rather than from NICU medical or nursing staff, which indicates that music therapy was not fully integrated among the unit's multidisciplinary team. CONCLUSION: Music therapy can reinforce family-centred care and promote parent-infant bonding, but additional efforts are required to integrate it into the care routinely provided by the NICU multidisciplinary team. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.7748/ncyp.2021.e1331" target="_blank" rel="noreferrer noopener">10.7748/ncyp.2021.e1331</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 Child Development Child Health Clinical Complementary Therapies Critical Care Families Infants Intensive Care Janner C maternal bonding May 2021 List medicines Music Therapy Nakstad B Neonatal Nursing Children and Young People Parents Patients Professional Research Söderström Gaden T Solevåg AL 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 2021 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 2021 List URL Address <a href="http://doi.org/10.1044/2020_ajslp-20-00090" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1044/2020_ajslp-20-00090</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 Speech-Language Pathologists in Pediatric Palliative Care: An International Study of Perceptions and Experiences Publisher An entity responsible for making the resource available American Journal of Speech-Language Pathology Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource families; multidisciplinary; palliative care; Patient Care; pediatric; qualitative analysis; speech-language pathology Creator An entity primarily responsible for making the resource Krikheli L; Erickson S; Carey LB; Carey-Sargeant CL; Mathisen BA Description An account of the resource Purpose The purpose of this study is to gather qualitative data regarding the experiences and perceptions of speech-language pathologists (SLPs) practicing in pediatric palliative care (PPC) and investigate their approaches for working with patients, families, and the multidisciplinary team. Method Ten participants from Australia, Canada, and the United States were recruited from a previous survey study. In-depth interviews were conducted via videoconferencing. Two coders used NVivo software to record and organize the data into themes. Interrater reliability of the coding was established with a third coder. The COnsolidated criteria for REporting Qualitative research 32-item checklist has been used for reporting the research. Results Interrater coding reliability (using weighted kappa) was .81, indicating "almost perfect" agreement on the selection of themes from the code frame. Emerging themes included clinical interventions, unique SLP skills in PPC, multidisciplinary team relationships, workforce issues, education and training, governance, medicolegal considerations, bioethical issues, and holistic care. Additional subthemes are also noted. In the absence of research evidence and practice recommendations, SLPs rely on client perspectives and clinical experience to guide their professional practice in PPC. Conclusions Qualitative survey analysis of the perceptions and experiences of SLP clinicians from three postindustrial countries identified nine major themes regarding PPC. Results expand on limited literature to date in the area of PPC. Future research using larger samples is needed to provide clinicians with best practice recommendations for working with patients, families, and the broader care team. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1044/2020_ajslp-20-00090" target="_blank" rel="noreferrer noopener">10.1044/2020_ajslp-20-00090</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 American Journal of Speech-Language Pathology Carey LB Carey-Sargeant CL Erickson S Families February 2021 List Krikheli L Mathisen BA multidisciplinary Palliative Care Patient Care Pediatric Qualitative Analysis speech-language pathology 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 2020 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 2020 List URL Address <a href="http://doi.org/10.1001/jamanetworkopen.2020.5424" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1001/jamanetworkopen.2020.5424</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 Congruence Gaps between Adolescents with Cancer and Their Families Regarding Values, Goals, and Beliefs about End-of-Life Care Publisher An entity responsible for making the resource available JAMA Network Open Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource pediatrics; adolescents; cancer; oncology; families; end-of life care Creator An entity primarily responsible for making the resource Friebert S; Grossoehme D H; Baker J N; Needle J; Thompkins J D; Cheng Y I; Wang J; Lyon M E Description An account of the resource Importance: Lack of pediatric advance care planning has been associated with poor communication, increased hospitalization, poor quality of life, and legal actions. Clinicians presume that families understand adolescents' treatment preferences for end-of-life care. Objective(s): To examine patient-reported end-of-life values and needs of adolescents with cancer and congruence with their families' understanding of these needs. Design, Setting, and Participant(s): This cross-sectional survey was conducted among adolescent-family dyads from July 16, 2016, to April 30, 2019, at 4 tertiary care pediatric US hospitals. Participants included 80 adolescent-family dyads (160 participants) within a larger study facilitating pediatric advance care planning. Adolescent eligibility criteria included being aged 14 to 21 years, English speaking, being diagnosed with cancer at any stage, and knowing their diagnosis. Family included legal guardians for minors or chosen surrogate decision-makers for those aged 18 years or older. Data analysis was performed from April 2019 to November 2019. Exposure: Session 1 of the 3-session Family Centered Pediatric Advance Care Planning for Teens With Cancer intervention. Main Outcomes and Measures: The main outcome was congruence between adolescents with cancer and their families regarding adolescents' values, goals, and beliefs about end-of-life care. Prevalence-adjusted and bias-adjusted kappa (PABAK) values were used to measure congruence on the Lyon Advance Care Planning Survey-Revised (Patient and Surrogate versions). Result(s): A total of 80 adolescent-family dyads (160 participants) were randomized to the intervention group in the original trial. Among the adolescents, 44 (55.0%) were female and 60 (75.0%) were white, with a mean (SD) age of 16.9 (1.8) years. Among family members, 66 (82.5%) were female and 65 (81.3%) were white, with a mean (SD) age of 45.3 (8.3) years. Family members' understanding of their adolescent's beliefs about the best time bring up end-of-life decisions was poor: 86% of adolescents wanted early timing (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but only 39% of families knew this (PABAK, 0.18). Families' understanding of what was important to their adolescents when dealing with their own dying was excellent for wanting honest answers from their physician (PABAK, 0.95) and understanding treatment choices (PABAK, 0.95) but poor for dying a natural death (PABAK, 0.18) and being off machines that extend life, if dying (PABAK, 0). Conclusions and Relevance: Many families had a poor understanding of their adolescent's values regarding their own end-of-life care, such as when to initiate end-of-life conversations and preference for being off machines that extend life. Pediatric advance care planning could minimize these misunderstandings with the potential for a substantial impact on quality of care. Copyright © 2020 American Medical Association. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1001/jamanetworkopen.2020.5424" target="_blank" rel="noreferrer noopener">10.1001/jamanetworkopen.2020.5424</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 Adolescents Baker J N Cancer Cheng Y I end-of life care Families Friebert S Grossoehme D H JAMA Network Open Lyon M E Needle J Oncology Oncology 2020 List Pediatrics Thompkins J D Wang J 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 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 July 2020 List URL Address <a href="http://doi.org/10.1038/s41372-020-0675-4" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1038/s41372-020-0675-4</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 review of approaches for resolving disputes between physicians and families on end-of-life care for newborns Publisher An entity responsible for making the resource available Journal of Perinatology Date A point or period of time associated with an event in the lifecycle of the resource 2020 Subject The topic of the resource end-of-life care; ethics; families; medical ethics; newborns; physicians Creator An entity primarily responsible for making the resource Cummings B M; Mercurio M R; Paris J J Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1038/s41372-020-0675-4" target="_blank" rel="noreferrer noopener">10.1038/s41372-020-0675-4</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 Cummings B M End-of-life Care Ethics Families Journal Of Perinatology July 2020 List Medical Ethics Mercurio M R Newborns Paris J J Physicians 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.yebeh.2008.05.010" target="_blank" rel="noreferrer noopener">http://doi.org/​10.1016/j.yebeh.2008.05.010</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 Behavior problems in children with tuberous sclerosis complex and parental stress Publisher An entity responsible for making the resource available Epilepsy and Behavior Date A point or period of time associated with an event in the lifecycle of the resource 2008 Subject The topic of the resource cancer; families; adolescents; Neurosciences & Neurology; seizure; attention; epilepsy; disorders; autism; Psychiatry; hyperactivity; autism spectrum disorder; diagnostic-criteria; population; tuberous sclerosis complex; Behavioral Sciences; mental; behavioral problems; frequency; infantile spasms; methylphenidate; mixed seizure disorder; parenting stress; retardation; tsc1; tuberous sclerosis; trajectory; characteristics Creator An entity primarily responsible for making the resource Kopp C M C; Muzykewicz D A; Staley B A; Thiele E A; Pulsifer M B Description An account of the resource Behavioral problems are common in children with tuberous sclerosis complex (TSC) and can be challenging to manage at home. Standardized measures were used to assess behavior in 99 pediatric patients with TSC and to evaluate parenting stress in their parents. About 40% of the pediatric patients presented clinically significant behavioral problems, most frequently involving symptoms of autism spectrum disorder, inattention, and hyperactivity. Higher seizure frequency, mixed seizure disorder, and low intellectual functioning placed the patient at significant risk for behavior problems. Almost 50% of participating parents reported experiencing clinically significant parenting stress, which was associated with specific characteristics of the child, including the presence of current seizures, a history of psychiatric diagnosis, low intelligence, and behavioral problems. Clinicians should be aware that behavioral problems are prominent in children with TSC. Referrals for behavioral intervention and monitoring of parental stress should be included in the medical management of children with TSC. (C) 2008 Elsevier Inc. All rights reserved. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.yebeh.2008.05.010" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2008.05.010</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). 2008 Adolescents Attention Autism Autism spectrum disorder behavioral problems Behavioral Sciences Cancer characteristics diagnostic-criteria Disorders Epilepsy Epilepsy and Behavior Families frequency hyperactivity infantile spasms Kopp C M C Mental methylphenidate mixed seizure disorder Muzykewicz D A Neurosciences & Neurology parenting stress Population Psychiatry Pulsifer M B retardation Seizure Staley B A Thiele E A Trajectory tsc1 Tuberous Sclerosis Tuberous sclerosis complex 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 September 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 September 2019 List URL Address <a href="http://doi.org/10.1111/apa.14935" target="_blank" rel="noreferrer noopener">http://doi.org/10.1111/apa.14935</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 Telling the truth to dying children-End-of-life communication with families Publisher An entity responsible for making the resource available Acta Paediatrica Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource pediatric palliative care; pediatrics; palliative care; families; end-of-life communication; communication Creator An entity primarily responsible for making the resource Lovgren M; Melin-Johansson C; Udo C; Sveen J Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/apa.14935" target="_blank" rel="noreferrer noopener">10.1111/apa.14935</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 Acta Paediatrica Communication End-of-life Communication Families Lovgren M Melin-Johansson C Palliative Care Pediatric Palliative Care Pediatrics September 2019 List Sveen J Udo C 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 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 May 2019 List URL Address <a href="http://doi.org/10.1177/1049732319837228" target="_blank" rel="noreferrer noopener">http://doi.org/10.1177/1049732319837228</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 Sibling Relationships Over the Life Course: Growing Up With a Disability Publisher An entity responsible for making the resource available Qualitative Health Research Date A point or period of time associated with an event in the lifecycle of the resource 2019 Subject The topic of the resource lived experience; Israel; qualitative; developmental disability; health; families; interpretive phenomenological analysis Creator An entity primarily responsible for making the resource Avieli H; Band-Winterstein T; Araten BT Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1177/1049732319837228" target="_blank" rel="noreferrer noopener">10.1177/1049732319837228</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). Description An account of the resource The research explores sibling relationships, and the ways in which they are shaped over the life course by family members, in families with a lifelong disability. In-depth, semistructured interviews were conducted with 15 family units including a parent, a sibling, and an adult sibling with a disability. The content analysis revealed five sibling relationship patterns: (a) "Not a child, but a parent caretaker"-the parent-surrogate sibling; (b) "We somehow grew apart"-the estranged sibling; (c) "It is important for me to maintain some kind of distance"-the bystander sibling; (d) "When there's something they want to tell him, they always send me"-the mediator sibling; and (e) "I love him to death"-the friend sibling. These patterns of adult sibling relationships are discussed in relation to family dynamics, values, and legacies; recommendations for practice and research are made. 2019 Araten BT Avieli H Band-Winterstein T Developmental Disability Families Health interpretive phenomenological analysis Israel lived experience May 2019 List Qualitative Qualitative Health Research 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 August 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 August 2018 List URL Address <a href="http://doi.org/10.22038/ijp.2018.28630.2511" target="_blank" rel="noreferrer noopener">http://doi.org/10.22038/ijp.2018.28630.2511</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 Spiritual Challenges Experienced by Nurses in Neonatal End of Life: A Qualitative Study Publisher An entity responsible for making the resource available International Journal of Pediatrics-Mashhad Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource Nurse; palliative care; Pediatrics; Qualitative Research; Death; NICU; barriers; infant; families; birth; intensive-care-unit; interventions; iran; of-life; Neonate Creator An entity primarily responsible for making the resource Ghaljaei F; Goli H; Rezaie N; Sadeghi N Description An account of the resource Background The literature reviews show that taking care of dying newborns for a nurse is associated with stress and anxiety, and nurses will be faced with many challenges, the present study aimed to explain the spiritual challenges experienced by nurses in neonatal end of life in the NICU. The present study was conducted with a qualitative method and "purposive" sampling. The study environment was NICU in the hospitals of Zahedan, Iran. Semi-structured interviews used for interview and data collection. A number of 24 participants with inclusion criteria were interviewed. Qualitative content analysis method was used with the conventional approach and inductive method with Graneheim and Lundman approach. Data analysis explored were categorized in three main themes: spiritual challenge of neonatal care with two-categories (palliative care, and care with love and affection); psychological / spiritual support challenges of family with two categories (spiritual support of family, psychological support of family), and nurses' spiritual distress with one category (nurse's trauma in neonatal care). In this study three themes were obtained: 1- Spiritual challenge of neonatal care with two-categories (palliative care, and care with love and affection); 2- Psychological / spiritual support challenges of family with two categories (spiritual support of family, psychological support of family), and 3- The nurses' spiritual distress with one category (nurse's trauma in neonatal care). Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.22038/ijp.2018.28630.2511" target="_blank" rel="noreferrer noopener">10.22038/ijp.2018.28630.2511</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 August 2018 List Barriers Birth Death Families Ghaljaei F Goli H Infant Intensive-care-unit International Journal of Pediatrics-Mashhad Interventions Iran Neonate Nicu Nurse Of-life Palliative Care Pediatrics Qualitative Research Rezaie N Sadeghi N Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource March 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 March 2018 List URL Address <a href="http://doi.org/10.1080/07481187.2017.1407012" target="_blank" rel="noreferrer">http://doi.org/10.1080/07481187.2017.1407012</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 Reflections on the development of a therapeutic recreation-based bereavement camp for families whose child has died from serious illness Publisher An entity responsible for making the resource available Death Studies Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource bereavement; Death; Families; serious illness; therapeutic recreation Creator An entity primarily responsible for making the resource Hanlon P; Guerin S; Kiernan G Description An account of the resource While bereavement camps serve as a support for children, this study examines a therapeutic recreation-based camp for families who have lost a child. The study triangulated documents, researcher reflection and staff interviews to highlight the themes of Searching & Finding, Getting to Know, Finding the Balance and Joining. Developing opportunistically through internal and external factors, the camp's evolution represents a closing of the loop, from supporting families of living children to also supporting the families of children who have died. Understanding the camp's evolution may facilitate other programs by highlighting the challenges in developing the program and the lessons learned. 2018-01 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1080/07481187.2017.1407012" target="_blank" rel="noreferrer">10.1080/07481187.2017.1407012</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 Bereavement Death Death studies Families Guerin S Hanlon P Kiernan G March 2018 List Serious Illness therapeutic recreation Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1007/s11912-004-0073-7" target="_blank" rel="noreferrer">http://doi.org/10.1007/s11912-004-0073-7</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Issues and challenges in palliative care for children with cancer Publisher An entity responsible for making the resource available Current Pain and Headache Reports Date A point or period of time associated with an event in the lifecycle of the resource 2005 Subject The topic of the resource PedPal Lit; Adolescent Bioethics Child Health Care Costs Humans Neoplasms/; and the family. The way in which the care is delivered; and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients; complications Pain/; etiology; Families; health-care providers; methods Reimbursement Mechanisms Terminal Care%X Although the majority of children with cancer are cured of their illness; the child; the services provided; therapy Palliative Care/economics/ethics/ Creator An entity primarily responsible for making the resource Friedman DL; Hilden JM; Powaski K Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1007/s11912-004-0073-7" target="_blank" rel="noreferrer">10.1007/s11912-004-0073-7</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article Description An account of the resource 2005 2005 Adolescent Bioethics Child Health Care Costs Humans Neoplasms/ and the family. The way in which the care is delivered and the place in which that care is given are not carved into a simple protocol. Quality of life is an important concept that is often overlooked. Educational initiatives for patients Backlog complications Pain/ Current Pain and Headache Reports etiology Families Friedman DL health-care providers Hilden JM Journal Article methods Reimbursement Mechanisms Terminal Care%X Although the majority of children with cancer are cured of their illness PedPal Lit Powaski K the child the services provided therapy Palliative Care/economics/ethics/ Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month Backlog URL Address <a href="http://doi.org/10.1097/00001163-200114020-00004" target="_blank" rel="noreferrer">http://doi.org/10.1097/00001163-200114020-00004</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource A developmental systems model for early intervention Publisher An entity responsible for making the resource available Infants & Young Children Date A point or period of time associated with an event in the lifecycle of the resource 2001 Subject The topic of the resource Family; Children; Intervention; Interventions; Families; Process Mapping; Core Principles; Developmental Framework; Developmental Systems Model; Early Intervention SYstems; Research to Practice Creator An entity primarily responsible for making the resource Guralnick MJ Description An account of the resource The article presents a rationale for and components of a developmental systems model to guide early intervention programs for vulnerable children and their families. Core principles emphasizing a developmental framework, integration, and inclusion, as well as related principles, are expressed in the context of a multicomponent interactive system. A central organizing feature of the model is its focus on maximizing family patterns of interaction by addressing potential stressors related to risk and disability conditions. It discusses the importance of consistency across the model's conceptual framework, knowledge based on developmental and intervention science, and professional practices and experiece. 2001 Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1097/00001163-200114020-00004" target="_blank" rel="noreferrer">10.1097/00001163-200114020-00004</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). Type The nature or genre of the resource Journal Article 2001 Backlog Children Core Principles Developmental Framework Developmental Systems Model Early Intervention SYstems Families Family Guralnick MJ Infants & Young Children Intervention Interventions Journal Article Process Mapping Research to Practice 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 2017 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Hospice Palliative Care Volunteers as Program and Patient/Family Advocates. Publisher An entity responsible for making the resource available The American Journal Of Hospice & Palliative Care Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Advocacy; Families; Hospice; Palliative Care; Patients; Programs; Volunteers Creator An entity primarily responsible for making the resource Claxton-Oldfield S, Blacklock K Description An account of the resource The objectives of this study were to examine (1) the extent to which hospice palliative care volunteers are involved in program and patient/family advocacy, (2) volunteers' willingness to engage in program and patient/family advocacy, and (3) volunteers' perceived needs for training on how to be an effective advocate. Thirty-four hospice palliative care volunteers responded to the survey developed for this study. The majority of the volunteers surveyed consider themselves advocates for their programs and many of those, who have not already done so, would be willing to promote their program (eg, give a community presentation, talk to local media) if asked. Half of the volunteers were aware of unmet needs of the patients/families they supported, and just over one-third wanted to advocate on behalf of their patients/families but did not know what to do or where to go. Recommendations for volunteer training are made. Identifier An unambiguous reference to the resource within a given context <a href="https://doi.org/10.1177/1049909116659464" target="_blank" rel="noreferrer">10.1177/1049909116659464</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2017 Advocacy Claxton-Oldfield S, Blacklock K December 2017 List Families Hospice Palliative Care Patients Programs The American Journal of Hospice & Palliative Care Volunteers 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 2017 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Redefined Boundaries: When Palliative Care Hits Home. Publisher An entity responsible for making the resource available Journal Of Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2017 Subject The topic of the resource Experience; Families; Palliative Treatment; Social Workers -- Attitudes Creator An entity primarily responsible for making the resource Jonas DF Description An account of the resource A personal narrative is presented which explores the author's experience as Master of Social Work (MSW) at the Division of Comfort and Palliative Care at Children's Hospital in Los Angeles, California. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1089/jpm.2017.0177" target="_blank" rel="noreferrer">10.1089/jpm.2017.0177</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2017 December 2017 List Experience Families Jonas DF Journal of Palliative Medicine Palliative Treatment Social Workers -- Attitudes Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month September 2016 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource "you Don't Know Until You Get There": The Positive And Negative "lived" Experience Of Parenting An Adult Child With 22q11.2 Deletion Syndrome. Publisher An entity responsible for making the resource available Health Psychology Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource 22q11.2 Deletion Syndrome; Ipa; Developmental-disabilities; Mothers; Stress; Psychology Clinical; Velo-cardio-facial Syndrome; Trauma; Interpretative Phenomenological Analysis; Velo-cardio-facial Syndrome; Families; Psychological Growth; Psychology; Symptoms; Prevalence; Disorders; Traumatic Distress Ipa; Velo-cardio-facial Syndrome; 22q11.2 Deletion Syndrome; Traumatic Distress; Psychological Growth Creator An entity primarily responsible for making the resource Goodwin J; McCormack L; Campbell LE Description An account of the resource OBJECTIVES: 22q11.2 deletion syndrome (22q11DS), a complex genetic syndrome associated with more than 180 features, presents complex challenges for parents including gaining a diagnosis. This phenomenological study sought the "lived" interpretations of parents supporting an adult child with 22q11DS, a poorly researched area. METHOD: Interpretative phenomenological analysis informed a detailed and open exploration of parenting a child through to adult life with 22q11DS. Using in-depth semistructured interviews, 8 parents (2 male, 6 female) of adult children with 22q11DS were individually interviewed; providing the data set for transcription and thematic analysis. RESULTS: Losing "I" Finding "self," overarched 6 subordinate themes that emerged from participants' articulated descriptions of psychological distress and psychological growth. Distress in parenting a child with 22q11DS was experienced through stigma, loss, grief, and guilt. Progressively, stigma undermined independence, friendships, and instinctual judgement. Ill-informed hierarchical structures experienced as layers of obstruction and lack of awareness of the syndrome triggered angry advocacy for their child. Diagnosis brought opposing relief and grief. In time, they came to value their unique "accomplishments," collected on their journey with 22q11DS, and in turn, consciously valued authentic "self" expressed through empathy, humility, gratitude, and pride. CONCLUSION: Parental distress through societal, educational, and health care invalidation persisted for decades for all participants. Conversely, distress facilitated psychological growth for redefining "self" and role as parents over time. Building on this phenomenological cameo, future research can educate against the plight of 22q11DS families. It can enlighten health care professionals in buffering against associated stigma, blame, and self-doubt, and in fostering psychological well-being. (PsycINFO Database Record Identifier An unambiguous reference to the resource within a given context DOI: 10.1037/hea0000415 Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2016 22q11.2 Deletion Syndrome Campbell LE Developmental-disabilities Disorders Families Goodwin J Health Psychology Interpretative Phenomenological Analysis Ipa McCormack L Mothers Prevalence Psychological Growth Psychology Psychology Clinical September 2016 List Stress Symptoms Trauma Traumatic Distress Velo-cardio-facial Syndrome Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month May 2016 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource The Needs Of Siblings Of Children With A Life-threatening Illness, Part 2: Psychometric Validation Of The Ibesfems. Publisher An entity responsible for making the resource available 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 Adjustment; Quality Of Life; Pediatric Palliative Care; Childhood-cancer; Young-people; Instrument Scni; Health Policy & Services; Families; Support; Unmet Needs Needs; Palliative Care; Pediatrics; Questionnaire Development; Siblings. Creator An entity primarily responsible for making the resource Olivier D’avignon M; Dumont S; Valois P; Cohen SR Description An account of the resource OBJECTIVE: The presence of a child afflicted with a life-threatening illness is a difficult situation for the child's siblings, especially when their own needs are left unmet. The present article describes the first three phases of research involved in the conceptualization, development, and content validation of an initial version of the Inventaire des Besoins de la Fratrie d'Enfants Malades Sévèrement (IBesFEMS) [Needs Inventory for Siblings of Critically ill Children]. METHOD: The first phase of the development of this instrument was conducted using qualitative methodology (focus groups: 6 siblings, 8 parents). The second phase consisted of validating the content of a pool of items developed according to the needs identified in the first phase. Some 21 participants (3 psychometricians, 3 researchers, 9 clinicians, and 6 siblings) evaluated each item for relevance and clarity. Finally, during the third phase, the acceptability and administration procedures of the preliminary version of the instrument were assessed qualitatively by five siblings. RESULTS: The first phase led to production of a typology made up of 43 needs in 10 different environments. The second phase allowed for selection of the items that were clearest and most relevant, based on expert opinion. This procedure gave rise to a first version of the IBesFEMS, which consisted of 48 items. SIGNIFICANCE OF RESULTS: The IBesFEMS appears to be a promising tool for specifically assessing the needs of the adolescent siblings of seriously ill children. Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2016 Adjustment Childhood-cancer Cohen SR Dumont S Families Health Policy & Services Instrument Scni May 2016 List Needs Olivier d’avignon M Palliative & Supportive Care Palliative Care Pediatric Palliative Care Pediatrics Quality Of Life Questionnaire Development Siblings. Support Unmet Needs Valois P Young-people Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month March 2016 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Lived Experiences Of Parents Caring For A Child With A Life-limiting Condition In Australia: A Qualitative Study. Publisher An entity responsible for making the resource available Journal Of Palliative Medicine Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Illness; Pediatric Palliative Care; Impact; Services; Cancer; Families; Support; Of-life; Public; Public Environmental & Occupational Health; Caregivers; Medicine General & Internal; Health Care Sciences & Services; Threatening Conditions Pediatric Palliative Care; Caregiver; Experiences; Life-limiting Conditions; Qualitative Creator An entity primarily responsible for making the resource Collins A; Hennessy-Anderson N; Hosking S; Hynson J; Remedios C; Thomas K Description An account of the resource BACKGROUND: Experiential studies in paediatric palliative care are needed to enable an ongoing international agenda which supports the development of responsive family supports. AIM: To provide an in-depth exploration of the prevalent lived experiences of parents who are currently providing care for a child with a life-limiting condition in Australia. DESIGN: Cross-sectional, prospective, qualitative study guided by an advisory group and reported according to the consolidated criteria for reporting qualitative studies. Transcripts were subjected to a thematic analysis, underpinned by an interpretative phenomenological framework. SETTING/PARTICIPANTS: Purposively sampled parents (n = 14) recruited from a statewide paediatric hospice who self-identified as a 'primary caregiver' for one or more children and/or adolescents (⩽18 years) with a life-limiting condition. RESULTS: Four key themes represented the prevalent experiences of parents: (1) trapped inside the house, (2) the protector, (3) living with the shadow and (4) travelling a different pathway. They describe parents' physical and social isolation, exclusion from the workforce, pervasive grief and associated impacts to their health and well-being. Limited professional and diminished social supports resulted in full ownership of care responsibility. Yet, parents embraced their role as 'protector', reporting acquired meaning and purpose. CONCLUSION: This study builds upon the growing body of evidence available in paediatric palliative care internationally. The key themes highlight the substantial demand for both physical and emotional support beyond what is currently offered and call for the implementation of carefully planned support services and other societal initiatives which seek to alleviate the broad health impacts to caregivers. Identifier An unambiguous reference to the resource within a given context DOI: 10.1177/0269216316634245 Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2016 Cancer Caregiver Caregivers Collins A Experiences Families Health Care Sciences & Services Hennessy-Anderson N Hosking S Hynson J Illness Impact Journal of Palliative Medicine Life-limiting Conditions March 2016 List Medicine General & Internal Of-life Pediatric Palliative Care Public Public Environmental & Occupational Health Qualitative Remedios C Services Support Thomas K Threatening Conditions 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 June 2016 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Siblings Of Children With A Complex Chronic Health Condition: Maternal Posttraumatic Growth As A Predictor Of Changes In Child Behavior Problems. Publisher An entity responsible for making the resource available Journal Of Pediatric Psychology Date A point or period of time associated with an event in the lifecycle of the resource 2016 Subject The topic of the resource Child Behavior Problems; Complex Chronic Conditions; Families; Pediatric Palliative Care; Posttraumatic Growth; Siblings. Creator An entity primarily responsible for making the resource Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H Description An account of the resource OBJECTIVE:  The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions.  METHODS:  Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth.  RESULTS:  Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems.  CONCLUSION:  The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. Identifier An unambiguous reference to the resource within a given context DOI: 10.1093/jpepsy/jsw053 Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2016 Andrews GS Cadell S Charting the territory Child Behavior Problems Complex Chronic Conditions DeLongis A Families Journal of Pediatric Psychology June 2016 List Pediatric Palliative Care Posttraumatic Growth Siblings. Siden H Steele R Stephenson E 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 2016 List Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Parenting In The Face Of Childhood Life-threatening Conditions: The Ordinary In The Context Of The Extraordinary Publisher An entity responsible for making the resource available 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 Distress; Framework; Child; Perspectives; Cancer; Health Policy & Services; Serious Illness; Outcomes; Families; Bereaved Siblings Life-threatening Condition; Palliative Care; Parenting; Pediatrics; Qualitative Description Creator An entity primarily responsible for making the resource Mooney-Doyle K; Deatrick JA Description An account of the resource OBJECTIVE: Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context. METHOD: Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings. RESULTS: Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children. SIGNIFICANCE OF RESULTS: The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions. Identifier An unambiguous reference to the resource within a given context DOI: 10.1017/S1478951515000905 Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2016 Bereaved Siblings Cancer Child Deatrick JA Distress Families Framework Health Policy & Services June 2016 List Life-threatening Condition Mooney-Doyle K Outcomes Palliative & Supportive Care Palliative Care Parenting Pediatrics Perspectives Qualitative Description Serious Illness