Barriers to and Facilitators of Neonatal Palliative Care Among Neonatal Professionals in China
child; human; palliative therapy; cross-sectional study; terminal care; neonatal intensive care unit; newborn; health personnel attitude; palliative nursing
Objectives: This study investigated institutional and personal barriers to and facilitators of neonatal palliative care facing neonatal professionals in China. Methods: A cross-sectional questionnaire surveyed 231 neonatal clinicians employed in 5 neonatal intensive care units from 2 children’s hospitals and 3 medical centers in China. Measurements: The translated modified version of the Neonatal Palliative Care Attitude Scale was used to survey neonatal clinicians’ attitudes and beliefs regarding neonatal palliative care. Results: Findings highlight 4 facilitators and 5 barriers among participating clinicians. Participants gave contradictory responses regarding the relative importance of curative treatment versus palliative care in the NICU. Negatively traumatic feelings, cultural issues and moral distress may impact this contradictory response and discourage clinicians from providing neonatal palliative care. Additionally, neonatologists and nurses held differing attitudes on several topics (p < 0.05). Conclusion: Further research should address strategies to improve knowledge and attitudes and relieve moral distress in NICU clinicians. Neonatal clinicians providing neonatal palliative care should receive regular palliative care training addressing culture- specific issues and communication skills. Practice Implications: Study findings will be beneficial to inform clinical education and practice. Regular interdisciplinary team training is needed to enhance support for palliative care and decrease clinicians’ moral distress during end-of-life care.
Gu L; Li ZZ; Peng NH; Zhou JF; Wei BR; Chang YC
American Journal of Hospice and Palliative Medicine
2022
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/10.1177/10499091211046236" target="_blank" rel="noreferrer noopener">10.1177/10499091211046236</a>
Effects of a Web-Based Pediatric Oncology Legacy Intervention on the Coping of Children With Cancer
BACKGROUND: Recurrent or refractory cancer often results in substantial and extensive physical, emotional, psychosocial, and spiritual burdens for children and their families. However, the therapeutic benefits of legacy interventions in children with recurrent or refractory cancer have been examined only recently, with limited attention to specific effects on children's coping abilities. OBJECTIVE: The purpose of this study was to determine the effects of a digital storytelling-legacy intervention on the adaptive coping of children with recurrent or refractory cancer. METHODS: This study used a 2-arm randomized, waitlist-controlled trial design. A total of 150 children with recurrent or refractory cancer and their parents were recruited via Facebook advertisements. RESULTS: The analysis sample included 92 dyads (35-intervention group, 57-control group). The legacy intervention showed small and statistically nonsignificant effects on primary-control and disengagement coping strategies among children with recurrent or refractory cancer. CONCLUSIONS: Legacy interventions using readily accessible digital storytelling have the potential to enhance the adaptive coping skills among children with recurrent or refractory cancer. Further research should determine how to enhance interventions tailored to this population to optimize the benefits.
Cho E; Dietrich MS; Friedman DL; Gilmer MJ; Gerhardt CA; Given BA; Hendricks-Ferguson VL; Hinds PS; Akard TF
American Journal of Hospice and Palliative Medicine
2022
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/10.1177/10499091221100809" target="_blank" rel="noreferrer noopener">10.1177/10499091221100809</a>
Ethics Roundtable: How Much is Too Much?
Infant; Newborn; Humans; Infant; Premature Ectodermal Dysplasia Pylorus/abnormalities; Gastric Outlet Obstruction; Carmi syndrome; end-of-life; epidermolysis bullosa; ethics; Life-limiting condition; Palliative Care
How should the medical team approach care for a very preterm infant with a significant painful and life-limiting condition when the parents wish to pursue all life-sustaining therapies? Here, we discuss a case of an infant born at 28 weeks' gestation with a diagnosis of Carmi syndrome (junctional epidermolysis bullosa and pyloric atresia). While the medical team felt that a do-not-resuscitate order and redirection to comfort care were appropriate, the family held on to hope for recovery and wished to continue with full intensive care measures.
Theodoro MF; Hays J; DiBartolomeo M; Carter B
American Journal of Hospice and Palliative Medicine
2023
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/10.1177/10499091221088829" target="_blank" rel="noreferrer noopener">10.1177/10499091221088829</a>
Patterns of Health Care Services During Pediatric Concurrent Hospice Care: A National Study
Children; End-of-life; Health care services; Hospice care; Pediatric
BACKGROUND: Children at end of life have unique and complex care needs. Although there is increasing evidence about pediatric concurrent hospice care, the health care services received while in hospice have not received sufficient attention. OBJECTIVES: To examine the health care services, unique clusters of health care services, and characteristics of the children in the clusters. METHODS: Multiple data sources were used including national Medicaid claims data. Children under 21years in pediatric concurrent hospice care were included. Using Medicaid categories assigned to claims, health care services were distributed across 20 categories. Latent class analysis was used to identify clusters of health care services. Demographic profiles of the clusters were created. RESULTS: The 6,243 children in the study generated approximately 500,0000 non-hospice, health care service claims while enrolled in hospice care. We identified 3 unique classes of health care services use: low (61.1%), moderate (18.1%), and high (20.8%) intensity. The children in the 3 classes exhibited unique demographic profiles. CONCLUSIONS: Health care services cluster together in unique fashion with distinct patterns among children in concurrent hospice care. The findings suggest that concurrent hospice care is not a 1-size-fit all solution for children. Concurrent hospice care may be customized and require attention to care coordination to ensure high-quality care.
Lindley LC; Svynarenko R; Mooney-Doyle K; Mendola A; Naumann WC; Keim-Malpass J
American Journal of Hospice and Palliative Medicine
2022
<a href="http://doi.org/10.1177/10499091211018661" target="_blank" rel="noreferrer noopener">10.1177/10499091211018661</a>
Pediatric End-of-Life Care in Rural America: A Systematic Review
systematic review; pediatric palliative care; pediatric end-of-life; pediatric hospice; rural health care; rural hospice
BACKGROUND: Families increasingly desire to bring their children home from the acute care setting at end of life. This transition includes home to rural or remote areas. Little is known about the end-of-life care for children who reside in rural areas. OBJECTIVE: The purpose of this study was to comprehensively review and summarize the evidence regarding end-of-life care for children living in rural areas, identify key findings and gaps in the literature, and make recommendations for future research. METHODS: A systematic review was conducted from 2011 to 2021 using MEDLINE and CINAHL databases. RESULTS: Nine studies met inclusion criteria. Key themes from the literature included: barriers, facilitators, and needs. Three articles identified barriers to end-of-life care for children in rural communities, which included access to end-of-life care and clinicians trained to provide pediatric care. Three studies identified and evaluated the facilitators of end-of-life care for rural children. The articles identified technology and additional training as facilitators. Four studies reported on the needs of rural children for end-of-life care with serious illness. CONCLUSIONS: We found major barriers and unmet needs in the delivery of rural pediatric end-of-life care. A few facilitators in delivery of this type of care were explored. Overall research in this area was sparse. Future studies should focus on understanding the complexities associated with delivery of pediatric end-of-life care in rural areas.
Stone W; Keim-Malpass J; Cozad MJ; Fornehed MLC; Lindley LC
American Journal of Hospice and Palliative Medicine
2021
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/10.1177/10499091211064202" target="_blank" rel="noreferrer noopener">10.1177/10499091211064202</a>
Effectiveness of Pediatric Concurrent Hospice Care to Improve Continuity of Care
pediatric hospice care; hospice length of stay; medicaid; concurrent hospice care; care continuity; emergency department use; hospice live discharge; inpatient admission
BackgroundThe 2010 Patient Protection and Affordable Care Act (ACA) mandated landmark hospice care legislation for children at end of life. Little is known about the impact of pediatric concurrent hospice care.ObjectiveThe purpose of this study was to examine the effect of pediatric concurrent vs standard hospice care on end-of-life care continuity among Medicaid beneficiaries.MethodsUsing national Medicaid data, we conducted a quasi-experimental designed study to estimate the effect of concurrent vs standard hospice care to improve end-of-life care continuity for children. Care continuity (i.e., hospice length of stay, hospice disenrollment, emergency room transition, and inpatient transition) was measured via claims data. Exposures were concurrent hospice vs standard hospice care. Using instrumental variable analysis, the effectiveness of exposures on care continuity was compared.ResultsConcurrent hospice care affected care continuity. It resulted in longer lengths of stays in hospice (? = 2.76, P < .001) and reduced hospice live discharges (? = ?2.80, P < .05), compared to standard hospice care. Concurrent care was not effective at reducing emergency room (? = 2.09, P < .001) or inpatient care (? = .007, P < .05) transitions during hospice enrollment.ConclusionOur study provides critical insight into the quality of care delivered for children at end of life. These findings have policy implications.
Lindley LC; Cozad MJ; Mack JW; Keim-Malpass J; Svynarenko R; Hinds PS
American Journal of Hospice and Palliative Medicine
2021
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/10.1177/10499091211056039" target="_blank" rel="noreferrer noopener">10.1177/10499091211056039</a>
Recent Changes in End-of-Life Decisions for Newborns in a Korean Hospital
Decision-making; End-of-life; Ethics; Neonatal Care; Neonatal Intensive Care Unit; Newborns
INTRODUCTION: Despite recent advances in neonatal intensive care in Korea, few studies exist on the end-of-life decisions in newborns. In this study, we sought to examine the status of end-of-life decisions in neonates, changes over time, and affecting factors. METHODS: This is a retrospective study of neonates who died between 2001 and 2015 in the neonatal intensive care unit of Dong-A University Hospital in Busan. The types of end-of-life decisions were divided into active resuscitation, withholding treatment, and withdrawing treatment. The study period was divided into 3 time frames using 5-year intervals to investigate changes over time. To identify the associated factors, we analyzed the demographic and clinical characteristics of the neonates and their parents using the chi2 test and independent t test. RESULTS: Of the neonatal deaths included in the analysis (n = 222), active resuscitation, withholding treatment, and withdrawing treatment groups accounted for 73.4%, 25.2%, and 1.4% of cases, respectively. When comparing changes over time, between period 1 (2001-2005), 2 (2006-2010), and 3 (2011-2015), the proportion of active resuscitation decreased significantly, from 80.9% to 60.8%, while that of nonactive resuscitation increased significantly from 19.1% to 39.2%. The factors associated with end-of-life decisions were the clinical condition of the neonate at the time of death, rather than general characteristics or socioeconomic factors. CONCLUSIONS: In Korea, changes in the decisions on end-of-life care in neonates are shifting from active resuscitation to nonactive resuscitation based on clinical conditions.
Kim MJ; Lee JH; Lee HD
American Journal Of Hospice And Palliative Medicine
2017
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).
10.1177/1049909117730024
Pain Management Concerns From the Hospice Family Caregivers' Perspective
Carers; End-of-life Care; Family Caregivers; Hospice Care; Pain Management; Pain Medications
BACKGROUND: Pain management is a challenging task for family caregivers in home hospice care. However, there are limited studies that examine the challenges regarding pain management in hospice care from family caregivers' perspectives. OBJECTIVES: To identify the challenges related to pain management faced by family caregivers in hospice care and to examine the validity of an existing framework that outlines pain management challenges for hospice family caregivers. DESIGN: We conducted a theory-driven, deductive content analysis of secondary data obtained from hospice family caregivers' interviews from a randomized clinical trial. SETTING/PARTICIPANTS: We included baseline interviews of 15 hospice caregivers of patients from hospice agencies in the States of Washington. The majority of the participants were white and female caregivers. They were spouse/partner or adult child living with the patient. RESULTS: The study identified 5 out of the 6 major themes in the original framework and confirmed that hospice family caregivers face a variety of challenges: caregiver-centric issues, caregiver's medication skills and knowledge, communication and teamwork, organizational skill, and patient-centric issues. A couple of the subthemes in the original framework were not present in our findings. We also expanded the original framework by adding 1 subtheme and revised 2 definitions in the original framework. CONCLUSION: The study provided an investigation on hospice family caregivers' difficulties in pain management. The results can inform health-care providers and researchers of family caregivers' challenges and provide insights for future designs of educational tools targeting pain management strategies, so that family caregivers can perform pain management effectively at home.
Chi NC; Demiris G; Pike KC; Washington K; Oliver DP
American Journal Of Hospice And Palliative Medicine
2017
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).
10.1177/1049909117729477
Aspects And Intensity Of Pediatric Palliative Case Management Provided By A Hospital-based Case Management Team
Case Management; Child; End-of-life Care; Only Child; Palliative Care; Palliative Care Team; Pediatrics; Retrospective Studies
OBJECTIVES: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children's university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. METHODS: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. RESULTS: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). SIGNIFICANCE OF RESULTS: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT.
Jagt Van Kampen CT; Colenbrander DA; Bosman DK; Grootenhuis MA; Kars MC; Schouten-Van Meeteren AYN
American Journal Of Hospice And Palliative Medicine
2017
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).
10.1177/1049909117695068
End-of-life Conversation Game Increases Confidence For Having End-of-life Conversations For Chaplains-in-training
Communication; End-of-life Conversations; Health Games; Palliative Care; Pastoral Care; Terminal Care
CONTEXT: Discussing end-of-life issues with patients is an essential role for chaplains. Few tools are available to help chaplains-in-training develop end-of-life communication skills. OBJECTIVE: This study aimed to determine whether playing an end-of-life conversation game increases the confidence for chaplain-in-trainings to discuss end-of-life issues with patients. METHODS: We used a convergent mixed methods design. Chaplains-in-training played the end-of-life conversation game twice over 2 weeks. For each game, pre- and postgame questionnaires measured confidence discussing end-of-life issues with patients and emotional affect. Between games, chaplains-in-training discussed end-of-life issues with an inpatient. One week after game 2, chaplains-in-training were individually interviewed. Quantitative data were analyzed using descriptive statistics and Wilcoxon rank-sum t tests. Content analysis identified interview themes. Quantitative and qualitative data sets were then integrated using a joint display. RESULTS: Twenty-three chaplains-in-training (52% female; 87% Caucasian; 70% were in year 1 of training) completed the study. Confidence scores (scale: 15-75; 75 = very confident) increased significantly after each game, increasing by 10.0 points from pregame 1 to postgame 2 ( P < .001). Positive affect subscale scores also increased significantly after each game, and shyness subscale scores decreased significantly after each game. Content analysis found that chaplains-in-training found the game to be a positive, useful experience and reported that playing twice was beneficial (not redundant). CONCLUSION: Mixed methods analysis suggest that an end-of-life conversation game is a useful tool that can increase chaplain-in-trainings' confidence for initiating end-of-life discussions with patients. A larger sample size is needed to confirm these findings.
Van Scoy L J; Watson-Martin E; Bohr T A; Levi B H; Green M J
American Journal Of Hospice And Palliative Medicine
2017
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).
10.1177/1049909117723619
Pediatric Primary Care Involvement In End-of-life Care For Children
Primary Health Care/sn [statistics & Numerical Data]; Terminal Care/sn [statistics & Numerical Data]; Adolescent; Age Factors; California; Child; Child Preschool; Female; Home Care Services/sn [statistics & Numerical Data]; Hospice Care/sn [statistics & Numerical Data]; Humans; Infant; Male; Retrospective Studies; Young Adult
OBJECTIVES: To examine the relationship between pediatric primary care involvement and hospice and home health care use at end of life. METHODS: California Medicaid data were used to estimate the relationship between pediatric primary care involvement and use of hospice and home health care using generalized estimating equations. RESULTS: Of the 2037 children who died between 2007 and 2010, 11% used hospice and 23% used home health. Among all children, primary care was not related to hospice use and was associated with home health use, usual source of care (OR = 1.83, P < .05), comprehensive care (OR = 1.60, P < .05), and continuous care (low: OR = 1.49, P < .05; moderate: OR = 2.57, P < .05; high: OR = 2.12, P < .05). Primary care for children aged 15 to 20 years was related to hospice use, usual source of care (OR = 4.06, P < .05) and continuous care (low: OR = 4.92, P < .05; moderate OR = 4.09, P < .05; high OR = 3.92, P < .05). Primary care for children under 5 years was associated with home health use, usual source of care (OR = 2.59, P < .05), comprehensive care (OR = 2.49, P < .05), and continuous care (low: OR = 2.22, P < .05; moderate: OR = 3.64, P < .05; high: OR = 3.62, P < .05). For children aged 6 to 14 years, this association was seen with continuous care (moderate: OR = 2.38, P < .05; high: OR = 2.13, P < .05). Home health for children aged 15 to 20 years was related to continuous care (moderate: OR = 2.32, P < .05). CONCLUSION: Primary care involvement affected hospice use among older age-groups and home health use among younger age-groups. These findings underscore the need for clinical knowledge about end-of-life care for children of all ages among primary care providers.
Lindley LC; Nageswaran S
American Journal Of Hospice And Palliative Medicine
2017
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10.1177/1049909115609589
Pediatrician Ambiguity In Understanding Palliative Sedation At The End Of Life
Conscious Sedation/mt [methods]; Palliative Care/mt [methods]; Pediatrics/mt [methods]; Terminal Care/mt [methods]; Adult; Aged; Child; Female; Health Knowledge Attitudes Practice; Humans; Male; Middle Aged; Pediatrics/sn [statistics & Numerical Data]; Practice Patterns Physicians'/sn [statistics & Numerical Data]; Surveys And Questionnaires
CONTEXT: Palliative sedation is a means of relieving intractable symptoms at the end of life, however, guidelines about its use lack consistency. In addition, ethical concerns persist around the practice. There are reports of palliative sedation in the pediatric literature, which highlight various institutional perspectives. OBJECTIVES: This survey of 4786 pediatric providers sought to describe their knowledge of and current practices around pediatric palliative sedation. METHODS: Our survey was administered to pediatricians who care for children at the end of life. The survey assessed agreement with a definition of palliative sedation, as well as thoughts about its alignment with aggressive symptom management. Bivariate analyses using chi<sup>2</sup> and analysis of variance were calculated to determine the relationship between responses to closed-ended questions. Open-ended responses were thematically coded by the investigators and reviewed for agreement. RESULTS: Nearly half (48.6%) of the respondents indicated that the stated definition of palliative sedation "completely" reflected their own views. Respondents were split when asked if they viewed any difference between palliative sedation and aggressive symptom management: Yes (46%) versus No (54%). Open-ended responses revealed specifics about the nature of variation in interpretation. CONCLUSIONS: Responses point to ambiguity surrounding the concept of palliative sedation. Pediatricians were concerned with a decreased level of consciousness as the goal of palliative sedation. Respondents were split on whether they view palliative sedation as a distinct entity or as one broad continuum of care, equivalent to aggressive symptom management. Institutional-based policies are essential to clarify acceptable practice, enable open communication, and promote further research.
Henderson C M; FitzGerald M; Hoehn K S; Weidner N
American Journal Of Hospice And Palliative Medicine
2017
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).
10.1177/1049909115609294
Religion And Spiritual Care In Pediatric Intensive Care Unit: Parental Attitudes Regarding Physician Spiritual And Religious Inquiry
Decision-making; Pediatric Intensive Care Unit; Religious Belief; Spiritual Care; Spiritual History
OBJECTIVE: Parents of seriously ill children require attention to their spiritual needs, especially during end-of-life care. The objective of this study was to characterize parental attitudes regarding physician inquiry into their belief system. MATERIALS AND MAIN RESULTS: A total of 162 surveys from parents of children hospitalized for >48 hours in pediatric intensive care unit in a tertiary academic medical center were analyzed. Forty-nine percent of all respondents and 62% of those who identified themselves as moderate to very spiritual or religious stated that their beliefs influenced the decisions they made about their child's medical care. Although 34% of all respondents would like their physician to ask about their spiritual or religious beliefs, 48% would desire such enquiry if their child was seriously ill. Those who identified themselves as moderate to very spiritual or religious were most likely to welcome the discussion (P < .001). Two-thirds of the respondents would feel comforted to know that their child's physician prayed for their child. One-third of all respondents would feel very comfortable discussing their beliefs with a physician, whereas 62% would feel very comfortable having such discussions with a chaplain. CONCLUSION: The study findings suggest parental ambivalence when it comes to discussing their spiritual or religious beliefs with their child's physicians. Given that improved understanding of parental spiritual and religious beliefs may be important in the decision-making process, incorporation of the expertise of professional spiritual care providers may provide the optimal context for enhanced parent-physician collaboration in the care of the critically ill child.
Arutyunyan T; Odetola F; Swieringa R; Niedner M
American Journal Of Hospice And Palliative Medicine
2016
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10.1177/1049909116682016
Physician Communication In Pediatric End-of-life Care: A Simulation Study
2016; End-of-life Communication; Palliative Care; Pediatric End-of-life Care; Pediatrics; Physician–parent Communication; Qualitative Methods; Simulation; Therapeutic Processes
Objective: The objective of this exploratory study is to describe communication between physicians and the actor parent of a standardized 8-year-old patient in respiratory distress who was nearing the end of life. Methods: Thirteen pediatric emergency medicine and pediatric critical care fellows and attendings participated in a high-fidelity simulation to assess physician communication with an actor-parent. Results: Fifteen percent of the participants decided not to initiate life-sustaining technology (intubation), and 23% of participants offered alternatives to life-sustaining care, such as comfort measures. Although 92% of the participants initiated an end-of-life conversation, the quality of that discussion varied widely. Conclusion: Findings indicate that effective physician–parent communication may not consistently occur in cases involving the treatment of pediatric patients at the end of life in emergency and critical care units. Practice Implications: The findings in this study, particularly that physician–parent end-of-life communication is often unclear and that alternatives to life-sustaining technology are often not offered, suggest that physicians need more training in both communication and end-of-life care. (PsycINFO Database Record (c) 2016 APA, all rights reserved)
Bateman LB; Tofil Nancy M; White Marjorie Lee; Dure Leon S; Clair Jeffrey Michael; Needham Belinda L
American Journal Of Hospice And Palliative Medicine
2016
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).
10.1177/1049909115595022
Pediatric Palliative Care Pilot Curriculum: Impact Of "pain Cards" On Resident Education
Adult; Communication; Curriculum; Female; Health Knowledge Attitudes Practice; Hospitals Pediatric/organization & Administration; Humans; Internship And Residency/methods; Male; Pain Management; Pain Measurement; Palliative Care; Pediatrics/education; Pilot Projects
Palliative Care Curriculum; Palliative Care Education; Pediatric Palliative Care; Pediatric resident; Pocket cards; Resident education
BACKGROUND:
Prior research has shown that less than 40% of pediatric program directors believe their graduating residents competent in palliative care. While many curricula have been developed to address this need, few have demonstrated improved comfort and/or knowledge with palliative care principles. The purpose of this study was to test a pocket card educational intervention regarding resident knowledge and comfort with palliative care principles.
METHODS:
Pocket reference cards were created to deliver fundamentals of pediatric palliative care to resident learners; didactics and case studies emphasized principles on the cards. Self-reported comfort and objective knowledge were measured before and after the curriculum among residents.
RESULTS:
Of 32 post-graduate year 2 (PGY2) residents, 23 (72%) completed the pre-test survey. The post-test was completed by 14 PGY2 residents (44%) and 16 of 39 PGY3/4 residents (41%). There was improvement in comfort with communication, as well as pain and symptom management among the residents. Knowledge of palliative care principles improved in part, with only a few survey questions reaching statistical significance. 100% of respondents recommended the cards be provided to their colleagues.
CONCLUSION:
This longitudinal curriculum, designed specifically for pediatric residents, was built into an existing training program and proved to be popular, feasible, and effective at improving comfort with basic palliative care principles.
Barnett MD; Maurer SH; Wood GJ
American Journal Of Hospice And Palliative Medicine
2016
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).
DOI: 10.1177/1049909115590965
Nurse Knowledge, Work Environment, And Turnover In Highly Specialized Pediatric End-of- Life Care.
Rn Turnover; Rn Work Environment; Advanced Practice Nurses; Nurse Intellectual Capital Theory; Perinatal Hospice; Perinatal Palliative Care
OBJECTIVE:
To examine the relationship between nurse knowledge, work environment, and registered nurse (RN) turnover in perinatal hospice and palliative care organizations.
METHODS:
Using nurse intellectual capital theory, a multivariate analysis was conducted with 2007 National Home and Hospice Care Survey data.
RESULTS:
Perinatal hospice and palliative care organizations experienced a 5% turnover rate. The professional experience of advanced practice nurses (APNs) was significantly related to turnover among RNs (β = -.032, P < .05). Compared to organizations with no APNs professional experience, clinical nurse specialists and nurse practitioners significantly reduced RN turnover by 3 percentage points. No other nurse knowledge or work environment variables were associated with RN turnover. Several of the control variables were also associated with RN turnover in the study; Organizations serving micropolitan (β = -.041, P < .05) and rural areas (β = -.037, P < .05) had lower RN turnover compared to urban areas. Organizations with a technology climate where nurses used electronic medical records had a higher turnover rate than those without (β = .036, P < .05).
CONCLUSION:
The findings revealed that advanced professional experience in the form of APNs was associated with reductions in RN turnover. This suggests that having a clinical nurse specialist or nurse practitioner on staff may provide knowledge and experience to other RNs, creating stability within the organization.
Lindley LC; Cozad MJ
American Journal Of Hospice And Palliative Medicine
2016
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).
Palliative Care In Undergraduate Medical Education—how Far Have We Come?
Adelaide; Palliative And Supportive Care; Australia And New Zealand; Professional Education; Australia; Medical Education
Palliative Care; Undergraduate Medical Education; Medical School; End-of-life Care
Purpose: There is an increasing demand for quality palliative care teaching within undergraduate medical education. Studies suggest that many junior doctors feel underprepared to perform end-of-life care. Previous systematic reviews on palliative care teaching within medical schools have identified significant variability and lack of consistency in teaching. This review aims to update the literature on the current status of palliative care teaching to undergraduates within medical schools. Method: A systematic review was undertaken on articles published from December 2001 to November 2015 on palliative care teaching for undergraduate medical students. In all, 650 abstract citations were obtained, of which 126 were relevant to the research questions. Thematic analysis was performed on remaining articles according to whether they discussed content and/or methodology of palliative care education, and data collated. Results: There is greater consistency in the content being delivered as part of end-of-life care education within medical schools. The most frequently taught topics include attitudes to death and dying, communication skills, and pain management. Pediatric care and religious/cultural issues are less frequently addressed. Teaching institutions are also utilising a broader range of teaching modalities. Conclusion: There is significant progress in palliative care education within medical schools. Ongoing challenges relate to correlating our current practice in medical education to professional recommendations and the expressed needs of junior doctors to practice competent end-of-life care.
Danielle Fitzpatrick; Rebecca Heah; Simon Patten; Helena Ward
American Journal Of Hospice And Palliative Medicine
2016
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).
10.1177/1049909116659737
Predictors Of Intention To Refer To Pediatric Palliative Or Hospice Care
Adult; Age Factors; Attitude Of Health Personnel; Attitude To Death; Continental Population Groups; Female; Hospice Care/psychology; Hospitals Pediatric/statistics & Numerical Data; Humans; Intensive Care Units Neonatal/statistics & Numerical Data; Intention; Male; Middle Aged; Nurses Pediatric/psychology; Palliative Care/psychology; Referral And Consultation/statistics & Numerical Data; Regression Analysis; Sex Factors
Andersen; Behavioral Model; Health Service Use; Hospice; Nurse; Palliative Care; Pediatrics; Referral
The purpose of this descriptive correlational study was to determine whether nurse characteristics, level of comfort with care of the dying, and spirituality predict intention to refer and timing of referral to pediatric palliative/hospice care. The Behavioral Model of Health Services Use served as the framework for this study. Data were collected from 105 pediatric nurses recruited from 7 patient units of one pediatric hospital. Regression analysis revealed several nurse factors (practice unit, years of experience, age, race/ethnicity) that predicted intent to refer and timing of referral to pediatric palliative/hospice care. The relationship between nurse characteristics and intent to refer was specific to certain medical conditions (HIV, extreme prematurity, brain injuries). Healthcare providers can use these findings to improve care for children with life-limiting illnesses.
N E Conner; N Uddin
American Journal Of Hospice And Palliative Medicine
2016
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).
DOI: 10.1177/1049909115593062
Evaluating Hospice And Palliative Medicine Education In Pediatric Training Programs.
Ccm; Nicu; Cardio; Cardiology; Critical Care Medicine; Education; Hematology; Heme/onc; Hospice; Neonatology; Oncology; Palliative Medicine; Pediatric Subspecialty
BACKGROUND:
Hospice and Palliative Medicine (HPM) competencies are of growing importance in training general pediatricians and pediatric sub-specialists. The Accreditation Council for Graduate Medical Education (ACGME) emphasized pediatric trainees should understand the "impact of chronic disease, terminal conditions and death on patients and their families." Currently, very little is known regarding pediatric trainee education in HPM.
METHODS:
We surveyed all 486 ACGME-accredited pediatric training program directors (PDs) - 200 in general pediatrics (GP), 57 in cardiology (CARD), 64 in critical care medicine (CCM), 69 in hematology-oncology (ONC) and 96 in neonatology (NICU). We collected training program's demographics, PD's attitudes and educational practices regarding HPM.
RESULTS:
The complete response rate was 30% (148/486). Overall, 45% offer formal HPM curriculum and 39% offer a rotation in HPM for trainees. HPM teaching modalities commonly reported included conferences, consultations and bedside teaching. Eighty-one percent of all respondents felt that HPM curriculum would improve trainees' ability to care for patients. While most groups felt that a HPM rotation would enhance trainees' education [GP (96%), CARD (77%), CCM (82%) and ONC (95%)], NICU PDs were more divided (55%; p < 0.05 for all comparisons vs. NICU).
CONCLUSION:
While most programs report perceived benefit from HPM training, there remains a paucity of opportunities for pediatric trainees. Passive teaching methods are frequently utilized in HPM curricula with minimal diversity in methods utilized to teach HPM. Opportunities to further emphasize HPM in general pediatric and pediatric sub-specialty training remains.
Singh AL; Klick JC; McCracken CE; Hebbar KB
American Journal Of Hospice And Palliative Medicine
2016
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).
DOI: 10.1177/1049909116643747