A Methodologic Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
community needs assessment (CNA); pediatric hospice; pediatric palliative care
CONTEXT: Prior studies have indicated that pediatric palliative care (PPC) resources vary across states and within regions in a state. Evaluating the current status of PPC and pediatric hospice care through a community needs assessment (CNA) can help address the gaps that exist in order to improve and increase access to PPC for children in need. OBJECTIVE(S): Using the state of Georgia as an example, the process, methods, lessons learned, and limitations in conducting a statewide PPC community needs assessment are described. METHOD(S): A mixed-method descriptive design with multiple stages incorporating different methodological approaches was utilized. These included: (1) literature review, (2) community profile, (3) survey and interview questionnaire development, (4) windshield survey, (5) identifying and interviewing key informants, and (6) quantitative survey of the state's hospice organizations. Key themes (Providing PPC, PPC Environment, Collaboration and Future of PPC) and subthemes emerged which were then triangulated across all existing data collection techniques to provide recommendations of varying feasibility and importance. RESULT(S): Are described in a subsequent manuscript. CONCLUSION(S): This approach can be utilized by other state organizations, coalitions, governments or national organizations looking to perform a CNA of palliative care, hospice resources, or could be applied to other geographical settings or types of care. Copyright © 2020. Published by Elsevier Inc.
Brock K E; Allen K E; Barton C; Shapiro R; Weintraub B; Wasilewski-Masker K; Escoffery C; Johnson K
Journal of Pain and Symptom Management
2020
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.004</a>
Strengths, Gaps, and Opportunities: Results of a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources
community needs assessment (CNA); pediatric hospice; pediatric palliative care
CONTEXT: Pediatric palliative care (PPC) can improve quality of life for children with life-threatening conditions and their families. However, PPC resources vary by state and within a state, PPC resources and personnel are often inequitably distributed towards urban areas with major hospital systems. A community needs assessment (CNA) that evaluates the current status of PPC and pediatric hospice care can help identify gaps and opportunities to improve PPC access. OBJECTIVES: A CNA was performed in the state of Georgia to explore the scope and gaps of PPC and hospice services and plan for what is needed to grow PPC and hospice services. METHODS: The CNA utilized a mixed-methods approach, including a community profile, literature search, windshield survey, key informant interviews, and a quantitative online survey. The methodology is outlined in a companion manuscript, entitled "A Methodological Approach to Conducting a Statewide Community Needs Assessment of Pediatric Palliative Care and Hospice Resources." RESULTS: Four key themes were identified from synthesis of primary and secondary data collection: defining and providing PPC, the environment for PPC in Georgia, coordination and collaboration, and the future of PPC in Georgia. Recommendations to improve PPC services in Georgia were categorized by feasibility and importance. High feasibility, high importance recommendations included expanding PPC education for both providers and patients, and creating a formal network or coalition of PPC providers and allies who can work collaboratively at multiple care levels across Georgia in expanding PPC services. CONCLUSIONS: In Georgia, this assessment provides the foundation for next steps in coordinated efforts between hospital-based clinicians, state hospice and palliative care organizations, and state policy makers to ultimately expand PPC care available to children and families.
Johnson K; Allen K E; West W; Williams-Kirkwood W; Wasilewski-Masker K; Escoffery C; Brock K E
Journal of Pain and Symptom Management
2020
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.04.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.04.009</a>
Decision aids available for parents making end-of-life or palliative care decisions for children: A scoping review
child; decision support technique; palliative care; parent; pediatrics
Aim: To identify and assess the quality of decision aids that align the decision, values and information provided for parents making end-of-life or palliative care decisions for children with life-threatening conditions. Method(s): Six databases and the grey literature were searched in December 2018. Two reviewers independently reviewed database citations, and one reviewed grey literature citations. Citation chaining via Scopus was conducted. Quality was assessed using IPDAS Collaboration Criteria. Result(s): After reviewing 18 671 database citations and 10 988 grey literature citations, 18 citations describing 11 decision aids remained. Decision aids targeted premature infants, children requiring airway management, children with cancer and children with scoliosis. Three aids underwent testing beyond initial development. Quality scores averaged 27 of 50 points. Conclusion(s): There are few high-quality decision aids available for use and a lack evidence of widespread clinical use. Additional research is needed to support systematic development and the use of decision aids with families. Copyright © 2020 Paediatrics and Child Health Division (The Royal Australasian College of Physicians)
Medeiros C; Buckley L; Metcalfe K; Narayanan U G; Widger K
Journal of Paediatrics and Child Health
2020
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).
<a href="http://doi.org/10.1111/jpc.14885" target="_blank" rel="noreferrer noopener">10.1111/jpc.14885</a>
Prolonged Grief, Posttraumatic Stress, and Depression Among Bereaved Parents: Prevalence and Response to an Intervention Program
bereaved parents; complicated grief; death of a child; family-oriented rehabilitation; prolonged grief disorder
Baumann I; Kunzel J; Goldbeck L; Tutus D; Niemitz M
Omega (Westport)
2020
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).
<a href="http://doi.org/10.1177/0030222820918674" target="_blank" rel="noreferrer noopener">10.1177/0030222820918674</a>
Welcoming expertise: Bereaved parents' perceptions of the parent-healthcare provider relationship when a critically ill child is admitted to the paediatric intensive care unit
Adult; Bereavement; Child; child and family wishes; Critical Illness -- Singapore; Death; Female; Grounded theory; Grounded Theory; health personnel attitude; Hospital Mortality; Hospitalized; Humans; Intensive care unit-paediatric; Intensive care units pediatric; Interviews as Topic; Male; Nurse; Parents; Parents/*psychology; Pediatric; Professional-Family Relations; Victoria
BACKGROUND: Entering the paediatric intensive care unit with a critically ill child is a stressful experience for parents. In addition to fearing for their child's well-being, parents must navigate both a challenging environment and numerous new relationships with healthcare staff. How parents form relationships with staff and how they perceive both their own and the healthcare providers' roles in this early stage of their paediatric intensive care journey is currently unknown. PURPOSE: This paper explores bereaved parents' perceptions of their role and their relationships with healthcare providers when their child is admitted to the intensive care unit, as part of a larger study exploring their experiences when their child dies in intensive care. METHODS: A constructivist grounded theory approach was utilised to recruit 26 bereaved parents from 4 Australian intensive care units. Parents participated in audio-recorded, semi-structured interviews lasting 90-150min. All data were analysed using the constant comparative analysis processes, supported by theoretical memos. RESULTS: Upon admission, parents viewed healthcare providers as experts, both of their child's medical care and of the hospital system. This expertise was welcomed, with the parent-healthcare provider relationship developing around the child's need for medical care. Parents engaged in 2 key behaviours in their relationships with staff: prioritising survival, and learning 'the system'. Within each of these behaviours are several subcategories, including 'Stepping back', 'Accepting restrictions' and 'Deferring to medical advice'. CONCLUSIONS: The relationships between parents and staff shift and change across the child's admission and subsequent death in the paediatric intensive care unit. However, upon admission, this relationship centres around the child's potential survival and their need for medical care, and the parent's recognition of the healthcare staff as experts of both the child's care and the hospital system.
Butler A E; Copnell B; Hall H
Australian Critical Care
2019
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).
<a href="http://doi.org/10.1016/j.aucc.2017.09.004" target="_blank" rel="noreferrer noopener">10.1016/j.aucc.2017.09.004</a>
Trauma to Transformation: the lived experience of bereaved parents of children with chronic life-threatening illnesses in Singapore
Asia; Attitude to Death; Bereavement – Singapore; Chinese; Critical Illness – Singapore; Ethnic Groups; Grounded Theory; Human; India – Ethnology; Interviews; Life Experiences – Evaluation – Singapore; Palliative Care – Singapore; Parent-Child Relations – Singapore; Parents – Psychosocial Factors – Singapore; Pediatric Care – Singapore; Posttraumatic Growth; Psychological – Prevention and Control – Singapore; Psychological Well-Being; Psychosocial; Qualitative Studies; Rituals and Ceremonies; Singapore; Single Parent – Psychosocial Factors; Spouses – Psychosocial Factors; Support
Background: In 2016, over 6.6 million children died globally, and 245 children died in Singapore. Chronic illnesses are prevalent causes of child mortality around the world. Despite growing research that examines the lived experience of parents bereaved by their child's chronic life-threatening illness, there is no such study within the Asian context. Methods: To bridge this knowledge gap, meaning-oriented, strength-focused interviews were conducted with 25 parental units (i.e. 6 couples, 13 lone mothers, 4 lone fathers, and 2 primary parental figures) who lost their child to chronic life-threatening illness in Singapore (N = 31), including those of Chinese (n = 17), Malay (n = 10) and Indian ethnicities (n = 4), between August 2017 and April 2018. Results: Data analysis adhering to the grounded theory approach revealed 7 themes and 25 sub-themes that were organized into a Trauma-to-Transformation Model of Parental Bereavement. This model shows the major milestones in participants' lived experience of their child's chronic life-threatening illness and death, starting from the diagnosis of their child's chronic life-threatening illness and the subsequent emotional turmoil (Theme 1), the mourning of their child's death and the losses which accompanied the death (Theme 3) and participants' experience of posttraumatic growth through reflection of their journey of caregiving and child loss (Theme 5). The model further describes the deliberate behaviors or 'rituals' that helped participants to regain power over their lives (Theme 2), sustain an intimate bond with their child beyond death (Theme 4), and transcend their loss by deriving positive outcomes from their experience (Theme 6). Finally, the model denotes that the lived experiences and well-being of participants were embedded within the health-and-social-care ecosystem, and in turn impacted by it (Theme 7). Conclusion: These themes and their corresponding sub-themes are discussed, with recommendations for enhancing culturally sensitive support services for grieving Asian parents around the globe.
Dutta O; Tan-Ho G; Choo P Y; Low X C; Chong P H; Ng C; Ganapathy S; Ho A H Y
BMC Palliative Care
2020
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).
<a href="http://doi.org/10.1186/s12904-020-00555-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-020-00555-8</a>
Changes in Clinical Course Before and After Do-Not-Resuscitate Order Placement in a Pediatric Intensive Care Unit Setting
consults; do-not-resuscitate; imaging; pediatric intensive care unit; procedures
Background: The relationship between clinical course and do-not-resuscitate (DNR) status has not been well studied in the pediatric intensive care unit (PICU) setting. Objective(s): To describe the relationship between DNR order placement and clinical course. Design(s): Single center retrospective cohort study. Setting/Subjects: Patients, ages 0-18 years, who have died in the PICU from 2008 to 2016. Measurements: Retrospective chart review of DNR status, patient characteristics, and clinical course. We compared length of stay and number of consults/procedures/imaging studies done on patients with early DNR (>48 hours before death), late DNR (within 48 hours of death), and no DNR order placement. Result(s): One-hundred and sixty-one children were included. Nearly half (48%) were male with median (interquartile range) age of 3 years (0-12). One-third (58) had an underlying oncologic diagnosis. Eighteen percent (29/161) were classified as early DNR, 33% (53/161) as late DNR, and 49% (79/161) as no DNR. We found no differences in patient characteristics or risk of mortality at admission among the groups. The early DNR group showed decreased number of invasive procedures (0.68), imaging studies (1), and consults (0.21) per day when compared with the late (2, 1.53, 0.50) and no DNR groups (2.09, 1.73, 0.43). Conclusion(s): Our results suggest that early DNR placement in the PICU is associated with a change in clinical course centered around less invasive care. Earlier DNR placement can potentially trigger a shift in care goals that could improve the quality of life for patients and mitigate emotional and physical toll on patients and their families during the highly stressful end-of-life time period.
Ennamuri S; Abramson E; Mauer E; Gerber L M; Nellis M E
Journal of palliative medicine
2020
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).
<a href="http://doi.org/10.1089/jpm.2019.0572" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0572</a>
Exploring Compassion from the Perspective of Health Care Professionals Working in Palliative Care
compassion; healthcare professionals; palliative care
Background: Despite the body of literature regarding the varying definition of compassion, there appears a lack of literature pertaining to the meaning of compassion from the perspective of health care professionals working in palliative care settings. Objective(s): The study aimed to explore how health care professionals working in palliative care settings view and/or understand the construct of compassion. Method(s): A qualitative approach using semistructured interviews was used. Interviews were conducted with eighteen health care professionals working in pediatric, adult, and aged palliative care settings. Interviews transcripts were thematically analyzed. Result(s): Thematic analysis identified four main interrelated themes and supplementary subthemes. Health care professionals working in palliative care settings identified their perception of the (1) meaning of compassion, (2) importance of providing compassionate care, (3) barriers to providing compassionate care, and (4) facilitating compassionate care. Conclusion(s): This study presents a novel understanding of the components of compassion from the perspective of health care professionals working in palliative care. While there is need for future research, important areas of improvement include increased resourcing, reducing time pressures, and education within palliative care settings. This will enable the fostering of compassionate care to patients, as well as enhanced well-being both professionally and personally for health care providers delivering such care.
Ferraz S L; O'Connor M; Mazzucchelli T G
Journal of palliative medicine
2020
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).
<a href="http://doi.org/10.1089/jpm.2019.0682" target="_blank" rel="noreferrer noopener">10.1089/jpm.2019.0682</a>
Preparing Nurses for Palliative Care in the NICU
End-of-Life Nursing Education Consortium (ELNEC); neonatal intensive care unit; nurses; nursing; palliative care; pediatric palliative care
Background: Neonatal intensive care unit (NICU) nurses require knowledge and skill to meet the unique needs of infants and families. Increasingly, principles of palliative care are being integrated into the NICU setting to improve the quality of care.Purpose: The purpose of this article is to describe the efforts of the End-of-Life Nursing Education Consortium (ELNEC) project and its Pediatric Curriculum, which began in 2003 to provide this education, and to also describe efforts by nurses to implement the training into their practice settings.Methods: The ELNEC Pediatric Palliative Care (ELNEC-PPC) project is a train-the-trainer educational program and evidence-based curriculum.Findings/results: Participants attend a course or receive online training and then apply the education to implement improved practices in areas such as symptom management, care at the time of death, and bereavement support for families.Implications For Research: Experiences with ELNEC-PPC have demonstrated that nurses can implement the curriculum to improve care.Implications For Practice: Continued attention to palliative care in this setting is needed, and future research is needed to evaluate the outcomes of this education and practice change.
Ferrell B; Thaxton C A; Murphy H; Fortney C A
Advances in Neonatal Care
2020
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<a href="http://doi.org/10.1097/ANC.0000000000000705" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000705</a>
Advances and Challenges in European Paediatric Palliative Care
child; decision-making; life-limiting; paediatric/pediatric; palliative care
Advances in both public health and medical interventions have resulted in a reduction in childhood mortality worldwide over the last few decades; however, children still have life-threatening conditions that require palliative care. Children's palliative care is a specialty that differs from palliative care for adults in many ways. This paper discusses some of the challenges, and some of the recent advances in paediatric palliative care. Developing responsive services requires good epidemiological data, as well as a clarity on services currently available and a robust definition of the group of children who would benefit from palliative care. Once a child is diagnosed with a life-limiting condition or life-limiting illness, parents face a number of complex and difficult decisions; not only about care and treatment, but also about the place of care and ultimately, place of death. The best way to address the needs of children requiring palliative care and their families is complex and requires further research and the routine collection of high-quality data. Although research in children's palliative care has dramatically increased, there is still a dearth of evidence on key components of palliative care notably decision making, communication and pain and symptom management specifically as it relates to children. This evidence is required in order to ensure that the care that these children and their families require is delivered.
Fraser L K; Bluebond-Langner M; Ling J
Medical Sciences (Basel)
2020
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).
<a href="http://doi.org/10.3390/medsci8020020" target="_blank" rel="noreferrer noopener">10.3390/medsci8020020</a>
A mixed-methods systematic review and meta-analysis of barriers and facilitators to paediatric symptom management at end of life
caregivers; child; meta-analysis; pain management; palliative care; pediatrics; systematic review; terminal care
Background: Symptom management for infants, children and young people at end of life is complex and challenging due to the range of conditions and differing care needs of individuals of different ages. A greater understanding of these challenges could inform the development of effective interventions. Aim(s): To investigate the barriers and facilitators experienced by patients, carers and healthcare professionals managing symptoms in infants, children and young people at end of life. Design(s): A mixed-methods systematic review and meta-analysis was undertaken (PROSPERO ID: CRD42019124797). Data sources: The Cochrane Library, PROSPERO, CINAHL, MEDLINE, PsycINFO, Web of Science Core Collection, ProQuest Dissertations & Theses Database, Evidence Search and OpenGrey were electronically searched from the inception of each database for qualitative, quantitative or mixed-methods studies that included data from patients, carers or healthcare professionals referring to barriers or facilitators to paediatric end-of-life symptom management. Studies underwent data extraction, quality appraisal, narrative thematic synthesis and meta-analysis. Result(s): A total of 64 studies were included (32 quantitative, 18 qualitative and 14 mixed-methods) of medium-low quality. Themes were generated encompassing barriers/facilitators experienced by carers (treatment efficacy, treatment side effects, healthcare professionals' attitudes, hospice care, home care, families' symptom management strategies) and healthcare professionals (medicine access, treatment efficacy, healthcare professionals' demographics, treatment side effects, specialist support, healthcare professionals' training, health services delivery, home care). Only one study included patients' views. Conclusion(s): There is a need for effective communication between healthcare professionals and families, more training for healthcare professionals, improved symptom management planning including anticipatory prescribing, and urgent attention paid to the patients' perspective. Copyright © The Author(s) 2020.
Greenfield K; Holley S; Schoth D E; Harrop E; Howard R F; Bayliss J; Brook L; Jassal S S; Johnson M; Wong I; Liossi C
Palliative Medicine
2020
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<a href="http://doi.org/10.1177/0269216320907065" target="_blank" rel="noreferrer noopener">10.1177/0269216320907065</a>
Ethical Dilemmas at the Beginning and End of Life: A Needs-Based, Experience-Informed, Small-Group, Case-Based Curriculum for Pediatric Residents
Artificial Nutrition; End of Life; Ethics/Bioethics; Futility; Hospice; Medical Ethics; Neonatal-Perinatal Medicine; Neonatology; Palliative Care; Palliative Medicine; Pediatrics; Terminal Care
Introduction: Pediatric residents are faced with ethical dilemmas in beginning- and end-of-life situations throughout their training. These situations are innately challenging, yet despite recommendations that residents receive training in ethics and end-of-life domains, they continue to report the need for additional training. To address these concerns, we developed an interactive and reflective palliative care and medical ethics curriculum including sessions focusing on ethical dilemmas at the beginning and end of life. Methods: This module includes a trio of case-based, small-group discussions on artificial nutrition and hydration, futility, and ethical considerations in neonatology. Content was developed based on a needs assessment, input from local experts, and previously published material. Trainees completed assessments of comfort and understanding before and after each session. Results: The module was attended and assessed by an average of 27 trainees per session, including residents and medical students. Knowledge of ethical considerations improved after individual sessions, with 86% of trainees reporting understanding ethical considerations involved in the decision to withdraw or withhold medically provided nutrition and hydration and 67% of trainees reporting understanding the use of the term futility. Trainee comfort in providing counseling or recommendations regarding specific ethical issues demonstrated a trend toward improvement but did not reach statistical significance. Discussion: We successfully implemented this innovative module, which increased trainees' comfort with end-of-life care and ethical conflicts. Future studies should focus on the trainees' ability to implement these skills in clinical practice.
Herbst L A; deSante-Bertkau J
MedEdPORTAL
2020
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<a href="http://doi.org/10.15766/mep_2374-8265.10895" target="_blank" rel="noreferrer noopener">10.15766/mep_2374-8265.10895</a>
Palliative care in the neonatal intensive care unit
Health Services Accessibility; Home Health Care; Hospice Care; Intensive Care Units; Multidisciplinary Care Team; Neonatal; Palliative Care; Pediatricians; Perinatal Care; Perinatal Death – Psychosocial Factors; Prenatal Diagnosis; Psychosocial; Support; United Kingdom
With increasing facilities for antenatal diagnosis, lowering gestation for intiation of intensive care, palliative care in the perinatal period is increasingly recognized as a specialist area. There have been standards and pathways developed in the UK that provides guidance to health professionals. Providing holistic perinatal palliative care depends on close multiprofessional working between the neonatal team and the palliative care professionals who are being integrated into the core neonatal services. Even though most neonates will continue to receive end of life care within the NICU, there are increasing number of families who choose to have end of life care either at home or a hospice. There is a need to develop services across the regions to provide equitable access to excellent clinical care as well as ongoing support to families following loss of a neonate. This short article explores the issues raised in the provision of palliative care in the perinatal period and offers practical guidance for paediatricians in this emerging area.
Jackson C; Vasudevan C
Paediatrics & Child Health
2020
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).
<a href="http://doi.org/10.1016/j.paed.2020.01.002" target="_blank" rel="noreferrer noopener">10.1016/j.paed.2020.01.002</a>
Health Care Professionals' Awareness of a Child's Impending Death
case study; children; decision-making; end-of-life issues; Midwest; professional; qualitative; theory development
Health care professionals' (HCPs) experiences during early pediatric end-of-life care were explored using a theory-building case study approach. Multiple data collection methods including observation, electronic medical record review, and semi-structured interviews were collected with 15 interdisciplinary HCPs across four cases. Within- and across-case analyses resulted in an emerging theory. HCPs' initial awareness of a child's impending death is fluid, ongoing, and informed through both relational and internal dimensions. Initial cognitive awareness is followed by a deeper focus on the child through time-oriented attention to the past, present, and future. HCPs engage in a "delicate dance of figuring out" key issues. Awareness was exemplified through four themes: professional responsibility, staying connected, grounded uncertainty, and holding in. The emerging theoretical model provides a framework for HCPs to assess their ongoing awareness, identify personal assumptions, and inform gaps in understanding when facilitating early end-of-life care discussions with families.
Kobler K; Bell C; Kavanaugh K; Gallo A M; Corte C; Vincent C
Qualitative Health Research
2020
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).
<a href="http://doi.org/10.1177/1049732320911627" target="_blank" rel="noreferrer noopener">10.1177/1049732320911627</a>
Consulting with a folk deity before making decisions: spiritual practices in parents facing end-of-life decisions for their child on life support with brain stem dysfunction
brain stem dysfunction; decision making; end-of-life; parents; qualitative; Spiritual practices
Background: Adolescents with brain stem dysfunction may undergo many invasive treatments, and parents are often faced with making the decision to withdraw treatment. However, in the face of their child's death, the spiritual practices of parents dealing with end-of-life decision-making remain under investigated.Purpose: This study explores the spiritual practices in parents making end-of-life decisions for adolescents on life support with brain stem dysfunction.Method: A descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan. Data were analysed using Colaizzi's seven-step protocol.Results: Three main themes emerged: (1) faith during decision-making, (2) struggles during decision-making, (3) transformation during decision-making. The findings indicate that "transforming the nature of hope" is the essence of the experience.Conclusion: Family-centred care, gaining insight into parental spiritual practices, and developing culturally-appropriate care are recommended.
Lin S C; Huang M C
International Journal of Qualitative Studies on Health and Well-being
2020
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).
<a href="http://doi.org/10.1080/17482631.2020.1756686" target="_blank" rel="noreferrer noopener">10.1080/17482631.2020.1756686</a>
Pediatric Concurrent Hospice Care: A Scoping Review and Directions for Future Nursing Research
concurrent hospice care; end-of-life care; hospice care; pediatrics; scoping review
In 2010, forgoing curative therapies were removed as a hospice eligibility criterion for children through section 2302 of the Patient Protection and Affordable Care Act called Concurrent Care for Children. Given that concurrent care is a federally mandated option for children and their families, no review of the science has been conducted. The purpose of this study was to systematically collect the evidence on concurrent hospice care, critically appraise the evidence, and identify areas for future nursing research. Of the 186 articles identified for review, 14 met the inclusion and exclusion criteria. Studies in this review described concurrent hospice care from a variety of perspectives: policy, legal, and ethics. However, only 1 article evaluated the impact of concurrent hospice care on outcomes, whereas several studies explained clinical and state-level implementation. There is a need for further studies that move beyond conceptualization and generate baseline and outcomes data. Understanding the effectiveness of concurrent hospice care might provide important information for future nursing research. The approaches used to disseminate and implement concurrent hospice care at state, provider, and family levels should be explored.
Lindley L C; Keim-Malpass J; Svynarenko R; Cozad M J; Mack J W; Hinds P S
Journal of Hospice and Palliative Nursing
2020
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).
<a href="http://doi.org/10.1097/NJH.0000000000000648" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000648</a>
Parental experiences in end-of-life decision-making in allogeneic pediatric stem cell transplantation: "Have I been a good parent?"
decision-making; end-of-life; experiences; hematopoietic stem cell transplantation; parental; pediatric
Background: In pediatric hematopoietic stem cell transplantation (HSCT), the end-of-life (EOL) phase and the loss of the child is often characterized by a sudden deterioration of the child following a period of intensive curative treatment. This demands a fast transition for parents. Therefore, an understanding of the parents' perspective on decision-making in such a complex situation is needed. This study aims to gain insight in parental experiences in EOL decision-making in allogeneic pediatric HSCT.Methods: A qualitative descriptive study was performed among parents of eight families. Data were thematically analyzed.Results: All parents were aware of their child's deterioration. Six families were confronted with a rapid deterioration, while two families experienced a gradual realization that their child would not survive. Parental EOL decision-making in pediatric HSCT shows a reflective perspective on the meaning of parenthood in EOL decision-making. Two central themes were identified: "survival-oriented decision-making" and "struggling with doubts in hindsight." Six subthemes within the first theme described the parents' goal of doing everything to achieve survival.Discussion: Parents experienced EOL decision-making mainly as a process guided by health care professionals (HCPs) based on the child's condition and treatment possibilities. The decision-making is characterized by following opportunities and focusing on hope for cure. In hindsight parents experienced doubts about treatment steps and their child's suffering. HCPs can strengthen the parental role by an early integration of palliative care, providing timely support to parents in the process of imminent loss. Advance care planning can be used to support communication processes, defining preferences for future care.
Mekelenkamp H; Lankester A C; Bierings M B; Smiers F J W; Vries M C; Kars M C; de Vries M C
Pediatric Blood & Cancer
2020
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<a href="http://doi.org/10.1002/pbc.28229" target="_blank" rel="noreferrer noopener">10.1002/pbc.28229</a>
Pediatric Palliative Transport in Critically Ill Children: A Single Center's Experience and Parents' Perspectives
end-of-life care; palliative transport; pediatric critical care
The transfer of critically ill children from intensive care units (ICUs) to their homes for palliation is seldom described. We report our 10-year pediatric palliative transport experience and conducted a survey to gain parents' perspectives of their child's transport experience. Over the study period, eight patients were transported from our pediatric ICU to their homes or hospice facilities. There were no intratransport adverse events. Parents who participated in the survey responded positively to the transport experience. The availability of a dedicated critical care transport service allowed for palliative transfers to be performed safely. Facilitating transport to allow withdrawal of life support at home is an acceptable option to families as part of holistic end-of-life care.
Menon A P; Mok Y H; Loh L E; Lee J H
Journal of Pediatric Intensive Care
2020
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).
<a href="http://doi.org/10.1055/s-0039-3401009" target="_blank" rel="noreferrer noopener">10.1055/s-0039-3401009</a>
Parents' experiences of feeding, swallowing, and nutrition in children receiving palliative care
children; nutrition; nutritional needs; palliative care; parent experiences; pediatric palliative care
Purpose: Parents caring for children receiving palliative care due to life-threatening illnesses face tremendous stressors, including providing nutrition to their child. Very little is known about this experience or how parents manage nutritional needs amidst the uncertainty of the illness. The purpose of this study was to explore parents' experiences, including strategies employed to cope with stressors and manage the feeding, swallowing, and nutrition of their children. Method(s): A qualitative descriptive design was used. Data was collected from 20 parents and 20 children. The parents (17 women) were aged 25-55 (mean 36). Children ranged from 11 days to 5 years (mean 15 months) with diagnoses including neurological conditions (6), congenital heart malformations (6), mitochondrial disorders (2), prematurity (8), and cancer (1). Data from parents: interviews, field observations, and levels of distress. Data from children was abstracted from their medical records. Analysis is ongoing. Interviews were transcribed and are being coded using open and process coding. Other data is being used to describe the sample and provide context. Result(s): (1) Guilt and grief are prominent for parents with feelings of failure as a parent. Distress levels were high related to the overall experience and the feeding, swallowing, and nutrition issues. (2) Parents cope by normalizing their experiences, taking it day by day, and maintaining optimism. (3) The projected trajectory of the child's illness affected the parents' experiences. (4) Feeding and nutrition management included taking part in providing nutrition in the manner best for the child and finding alternative ways to nurture and bond with the child. Parents relied on support of family, other parents, and online groups. Good interprofessional communication was felt to be key to good care for the child. Conclusions (Including Clinical Relevance): Having a child with a life-threatening illness, affecting the parent's ability to feed the child, is fraught with grief, high levels of distress, and difficulty achieving the parenting role. Over time parents adapt and modify their role. Parents expressed a need for additional support and training to manage their child's nutrition. Health care professionals must take into account the emotional burden that parents experience. Services should be family-centered with support and training for parents.
Pyke H; Norton S; Blaakman S W; Korones D N
Dysphagia
2019
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).
<a href="http://doi.org/10.1007/s00455-019-10022-z" target="_blank" rel="noreferrer noopener">10.1007/s00455-019-10022-z</a>
Early for Everyone: Reconceptualizing Palliative Care in the Neonatal Intensive Care Unit
care planning; coping; neonatal intensive care; neonate; palliative care; parent; shared decision-making
Background: Palliative care (PC) in the neonatal intensive care unit (NICU) is often provided exclusively to infants expected to die. Standards of care support providing PC early after diagnosis with any condition likely to impact quality of life.Purpose: To determine the state of early PC practice across populations to derive elements of early PC applicable to neonates and their families and demonstrate their application in practice.Search Strategy: Multiple literature searches were conducted from 2016 to 2019. Common keywords used were: palliative care; early PC; end of life, neonate; NICU; perinatal PC; pediatric PC; family-centered care; advanced care planning; palliative care consultant; and shared decision-making.Findings: Early PC is an emerging practice in adult, pediatric, and perinatal populations that has been shown to be helpful for and recommended by families. Three key elements of early PC in the NICU are shared decision-making, care planning, and coping with distress. A hypothetical case of a 24-week infant is presented to illustrate how findings may be applied. Evidence supports expansion of neonatal PC to include infants and families without terminal diagnoses and initiation earlier in care.Implications For Practice: Involving parents more fully in care planning activities and decision-making and providing structured support for them to cope with distress despite their child's prognosis are essential to early PC.Implications For Research: As early PC is incorporated into practice, strategies should be evaluated for feasibility and efficacy to improve parental and neonatal outcomes. Researchers should consider engaging NICU parent stakeholders in leading early PC program development and research.
Quinn M; Weiss A B; Crist J D; Fortney C A
Advances in Neonatal Care
2020
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).
<a href="http://doi.org/10.1097/ANC.0000000000000707" target="_blank" rel="noreferrer noopener">10.1097/ANC.0000000000000707</a>
Bibliotherapy and Bereavement: Harnessing the Power of Reading to Enhance Family Coping in Pediatric Palliative Care
bereavement; bibliotherapy; children; grief; loss; palliative care; pediatrics
Bibliotherapy is a therapeutic intervention that could potentially be utilized by pediatric palliative care social workers to aid in providing individualized support and adaptive coping techniques through end-of-life and bereavement. Multiple modalities of implementing bibliotherapy are considered, including applications in individual and group counseling. An institutionally supported bibliotherapy program that aims to provide therapeutic and recreational texts for patients, families and clinicians is described. Suggested guidelines and book titles for use in practice with bereaved siblings and families are provided alongside targeted description for use in clinical practice.
Rusch R; Greenman J; Scanlon C; Horne K; Jonas D F
Journal of social work in end-of-life and palliative care
2020
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).
<a href="http://doi.org/10.1080/15524256.2020.1745728" target="_blank" rel="noreferrer noopener">10.1080/15524256.2020.1745728</a>
Nurses' Perceptions of the Palliative Care Needs of Neonates With Multiple Congenital Anomalies
Abnormalities; Age Factors; Consent (Research); Content Analysis; Data Analysis Software; Descriptive Statistics; Educational Status; Feedback; Female; Health Services Needs and Demand – In Infancy and Childhood; Human; Infant; Intensive Care Units; Interviews; Male; Multiple; Neonatal; Neonatal Intensive Care Nursing; Newborn; Nurse Attitudes – Evaluation; Palliative Care; Quality of Life; Questionnaires; Semi-Structured Interview; Thematic Analysis; Time Factors
This study was conducted to determine neonatal intensive care unit (NICU) nurses' opinions about the palliative care needs of neonates with multiple congenital anomalies. The study sample consisted of the 20 nurses who agreed to participate in the study and worked in the NICU between November and December 2017. A one-to-one interview method was utilized using a semistructured interview form. Written consent was obtained from participants and reconfirmed verbally prior to data collection. In the study, most of the nurses stated that the therapeutic medical treatment should not be started for dying neonates with multiple congenital anomalies. It was also found that nurses did not have enough palliative care knowledge for neonates. The palliative care needs of the neonates with multiple congenital anomalies in NICUs were found to be pain management, infection care, enhancing quality of life by avoiding unnecessary medical practices, skin care, the care of the baby in the ventilator, timely application of the treatment of neonates, and supporting family.
Şener Taplak A; Gürol A; Polat S
Journal of Hospice and Palliative Nursing
2020
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).
<a href="http://doi.org/10.1097/NJH.0000000000000628" target="_blank" rel="noreferrer noopener">10.1097/NJH.0000000000000628</a>
Considering medical assistance in dying for minors: the complexities of children's voices
children; death; euthanasia; law
Medical assistance in dying (MAID) legislation in Canada followed much deliberation after the Supreme Court of Canada's ruling in Carter v. Canada Included in this deliberation was the Special Joint Committee on Physician Assisted Dying's recommendation to extend MAID legislation beyond the inclusion of adults to mature minors. Children's agency is a construct advanced within childhood studies literature which entails eliciting children's voices in order to recognise children as active participants in constructing their own childhoods. Using this framework, we consider the possible extension of MAID legislation to most minors. We highlight important questions regarding how insights from children's voices could be mobilised in the life or death context of MAID. We conclude that children's voices have the potential to help determine their eligibility for MAID; however, incorporating children's voices in the context of MAID requires careful consideration due to the complexity of voice.
Singh H K; Macdonald M E; Carnevale F A
Journal of Medical Ethics
2020
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).
<a href="http://doi.org/10.1136/medethics-2019-105762" target="_blank" rel="noreferrer noopener">10.1136/medethics-2019-105762</a>
Creating evidence: Findings from a grounded theory of memory-making in neonatal bereavement care in Australia
Bereavement; Infant; Memory-making; newborn; Parent; Photography
PURPOSE: Perinatal and neonatal palliative care guidelines recommend the provision of photographs and other mementos as an element of care for parents bereaved by neonatal loss. However, little is known about parents' perceptions of such bereavement interventions. This study explored the significance of memory-making for bereaved parents and the impact of memory-making on parents' experience of loss following neonatal loss. DESIGN AND METHODS: We conducted semi-structured interviews with 18 bereaved parents. A grounded theory approach informed by Corbin and Strauss was used to underpin data sampling, data collection and data analysis. A constant comparative approach was used to engage in open, axial and selective coding to distil parents' stories into categories supporting a core concept. RESULTS: "Creating evidence" emerged as a key theme in the grounded theory of memory-making in bereavement care for parents following neonatal loss. Creating evidence involved taking photographs, creating mementos, as well as involving friends and family during the baby's time in the Neonatal Unit. CONCLUSIONS: Creating evidence affirmed the life of the baby and the role of the parents. Creating evidence was a significant element of memory-making that had a positive impact on parents' experience of bereavement. PRACTICE IMPLICATIONS: Parents should be supported to create evidence of their baby's life, through taking photos, creating mementos, and involving others in their baby's care. Such interventions provide affirmation of the baby's life and of the individual's role as a parent.
Thornton R; Nicholson P; Harms L
Journal of Pediatric Nursing
2020
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).
<a href="http://doi.org/10.1016/j.pedn.2020.04.006" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.04.006</a>
Applying Palliative Care Principles to Communicate With Children About COVID-19
children; communication; coronavirus; COVID-19; pediatric; pediatric palliative
Children are seeing rapid changes to their routines and facing an unpredictable future. Palliative care teams may consider expanding their communication training and skill sets to help families consider caring ways to communicate with their children and grandchildren about the coronavirus. Palliative care teams are wise to encourage families to ground their communication with children on key values: honesty and trust, self-compassion, safety, sensitivity, connection, preparedness, community building, recognition of death as a part of the life cycle, and legacy. Copyright © 2020 American Academy of Hospice and Palliative Medicine
Weaver M S; Wiener L
Journal of Pain and Symptom Management
2020
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).
<a href="http://doi.org/10.1016/j.jpainsymman.2020.03.020" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2020.03.020</a>
Specialized Pediatric Palliative Care in Neonates with Life-Limiting Illness: A Systematic Review
life limiting; outcomes; palliative care; perinatal; teams
OBJECTIVE: The aim of this study is to assess the impact of specialized pediatric palliative care (PPC) on neonates with life-limiting conditions compared to standard care. STUDY DESIGN: MEDLINE, PsycINFO, Cochrane Central Register of Controlled Trials, Web of Science, CINAHL, Scopus, and Embase databases were searched from January 2000 to September 2018. Randomized clinical trials, experimental or observational studies, and secondary administrative database analyses published in English, Spanish, French, and German were included. Two independent reviewers extracted data, and used the Newcastle-Ottawa Scale and the Cochrane Risk of Bias Tool for quality analysis. Discrepancies were resolved as a team. RESULTS: From the 37,788 records obtained, only eight articles met the inclusion criteria. A meta-analysis was not possible due to the heterogeneity in how the outcomes were defined; however, a qualitative synthesis of the results was possible; organizing outcomes into eight different categories: psychological, social and spiritual support; communication; location of care; symptom management; bereavement care; predicted versus actual neonatal outcomes; and parental coping, stress, and satisfaction. CONCLUSION: Specialized versus may have an impact on neonates with life-limiting conditions and their families. More studies that evaluate the impact of specialized versus in neonates with sound statistical analysis is warranted.
Zuniga-Villanueva G; Widger K; Medeiros C; Trenholm M; Streuli J C
American Journal of Perinatology
2020
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).
<a href="http://doi.org/10.1055/s-0040-1710031" target="_blank" rel="noreferrer noopener">10.1055/s-0040-1710031</a>